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United Mitochondrial Disease Foundation

Volume 11 • Issue 1 • Winter 2006

From February 2002 to July 2003, anon-line questionnaire was linked to theUMDF website (www.umdf.org).Families were asked to participate inthis questionnaire if at least one mem-ber (the "patient") was diagnosed witha mitochondrial disorder by a physi-cian. The questionnaire contained 27questions regarding the health of thepatient, and 15 yes/no questions regard-ing potential diagnoses in each of 10different relatives (parents, grandpar-ents, aunts and uncles). The responseswere sent to us without names or otheridentifying information. This studystarted as a genetic counseling (mas-ter's) thesis project by Brittany (then,Brittany Boldt) at California StateUniversity Northridge, with the studycontinuing past her graduation. Rarefor a master's thesis, the results of thisstudy were significant enough for pub-lication, and in fact were just recentlypublished by the Journal of AffectedDisorders as a PreliminaryCommunication entitled "MitochondrialInheritance in Depression, Dysmotilityand Migraine?" (Burnett et al., 2005,88:109-116). The Journal of AffectedDisorders is dedicated to research andpatient care in depression. With thevalidation that peer-reviewed publica-

Results of the "Families Dealing withMitochondrial Disease" On-line

Questionnaire

Depression, Dysmotility and MigraineAre Common in the Matrilineal

Relatives of Patients With MaternallyInherited Mitochondrial Disease

Richard G. Boles, M.D. and Brittany B. Burnett, M.S.

Childrens Hospital Los Angeles andCalifornia Pacific Medical Center, San

Francisco

ITOCHONDRIAL EWSNM

Chapter NewsPage 5-7

Fundraisers2-13

Vacation Toward a Cure

Page 15

Adults Corner Page 19

LEAP & HeartstringsForms

Page 22-23

?Ask ttheMito Doc

See Page 4

NEW LOGO is OFFICIAL – See

Page 18 to check outthe logo and new

tagline.

Continued on page 11

Mark Your Calendars!Sheraton Atlanta HotelAtlanta, Georgia, USA

June 14-17, 2006Did you get your brochure?

Register online at www.umdf.org

Mastering theMitochondrial Maze

Atlanta 22006

Prior to 1990, Chuck Mohan wasliving the American Dream - ownerand operator of Mohan's Restaurant,husband to a beautiful wife, andfather of two healthy children. InDecember of that year, his 11-year-old daughter, Gina, had her firstseizure and thus began the Mohans’journey into an endless nightmare of

Continued on page 8

Charles A. Mohan, Jr.More than 10 Years of Passion and

Dedication Toward the Quest for a Cure

Chuck with Heidi Marie Danielin San Diego during the 2001

conference

2 Mitochondrial News Winter 2006

As my first “Chairman'sMessage”, I would like to take thisopportunity to thank the Board ofTrustees for entrusting me to servein this capacity for the UnitedMitochondrial Disease Foundation(UMDF). It is with great honor

that I accept the challenge to continue the great worksthat the foundation has accomplished over the past 10years under Chuck Mohan's leadership.

In 2006, we will celebrate ten years of helping patientsand families better care for their loved ones - throughinformation and referral, patient registry and networking,hosting international symposia, and resource connections.In ten years of promoting RESEARCH, the UMDF hasawarded more than $2,700,000 in grant money dedicatedto mitochondrial research and will present more than$1,000,000 in research grant money at the upcoming con-ference in June.

Have we found a cure yet? Unfortunately, the answerto that is “no,” however, many physicians and researchersagree that the field is growing and promising new pro-jects are submitted each year to our grant program. Whatmysteries will be unlocked in the next 10, 15, 20 yearsthat will move us closer to better treatments and ultimate-ly to a cure?

The Board of Trustees and the UMDF staff are dedi-cated to continuing the mission - to promote research andeducation for the diagnosis, treatment and cure of mito-chondrial disorders and to provide support to affectedindividuals and families - so that the researchers can putthe missing pieces together and unlock those mysteries.

I look forward to working with the Board, its commit-tees, and the UMDF staff in the upcoming year andbuilding on the successes we have accomplished in thepast ten years.

Sincerely,

John A. DiCeccoChairman, UMDF Board of Trustees

Chairman’s Message

Board UpdateNew Officers (pictured below)Please help us welcome our new board officers:Chairman - John A. DiCeccoVice Chairman - Stanley DavisTreasurer - W. Dan WrightSecretary - Sharon Shaw

Newly Elected Board MembersMarty Lyman (see page 9)Robert Polsky (see page 9)

Chair EmeritusThe UMDF Board recently created the position of ChairEmeritus of the Board of Trustees of The UnitedMitochondrial Disease Foundation. Appropriate changeswill be made to the bylaws and voted by the generalmembership in the future. The Chair Emeritus will serveas a permanent, non-voting, position on the UMDF Board.It was also agreed that, until such time as the position isformally created in the bylaws, the Board of Trustees shallrecognize Chuck Mohan as the Chair Emeritus.

Upcoming Board MeetingsAlthough the Executive Committee meets via conferencecall every 4-6 weeks, the full board will meet byconference call the end of April and then physically meetagain during the 2006 conference in Atlanta, GA.

Outgoing Board MembersChuck Mohan, Chairman, term 1996-2005Nick Rillo, Trustee and Officer, term 1996-2005We honor these wonderful, devoted volunteers and lookforward to their continued commitment to the UMDFMission (See pages 8 and 9).

Stan DavisVice Chairman

Pepperpike, Ohio

W. Dan WrightTreasurer

Vernon, TX

Sharon ShawSecretary

Cave Creek, AZ

United Mitochondrial Disease Foundation Trustee Officers

John A. DiCeccoChairmanApollo, PA

3Mitochondrial News Winter 2006

It hardly seems possible - 10years ago The United MitochondrialDisease Foundation was createdthrough the consolidation of severalsmaller "mito" disease groups. Weare observing our 10th anniversaryin 2006, and I think it offers a goodopportunity to reflect. Followingare some random thoughts ... • Ours is a bittersweet anniversary;

much sadness is mixed with joy.Too many of our children and toomany of our friends havesuccumbed to mitochondrialdisease. And yet we are all betterfor having known these goodpeople; joy can coexist withsadness.

• No matter the depth of thechallenge - it is better to rise eachday with a sense of purpose thanto muddle aimlessly about. Eachof our "Mito" familiesunderstands the precious gift oflife and – while the tasks faced ona daily basis may seemoverwhelming at times – each hasa passionate commitment to makethe most of every moment oftogetherness (a lesson otherswould do well to learn).

• We have come to not only believe– but expect – there is atechnological solution to almostany problem. The fact of thematter is that science is hard workand ten years is not a long timewhen we think in terms ofmedical research. Our realchallenge is to not weaken in ourresolve to find treatments andcures for mitochondrial diseasesdespite this particular moment'slack of success. It is in the nextmoment that triumph may yet befound.

Some Thoughts at the Tenth Anniversaryof the United Mitochondrial DiseaseFoundation

J. Thomas ViallCEO/Executive Director

Board of TrusteesJohn A. DiCecco - Chairman

Stanley Davis - Vice ChairmanW. Dan Wright - TreasurerSharon Shaw - Secretary

Bruce H. Cohen, M.D.Gerald A. Cook, Esq.

Charles L. Hoppel, M.D.Richard W. Kubach, Jr.

Marty LymanMary Pisani

Robert PolskyJoseph Rice

Non-Voting MembersCharles A. Mohan, Jr. - Chair Emeritus

J. Thomas Viall - CEO/ExecutiveDirector

Scientific Advisory BoardMichael J. Bennett, Ph.D., FRCPath,

DABCCGerard T. Berry, M.D.

Richard G. Boles, M.D.Salvatore DiMauro, M.D.

Annette Feigenbaum, M.D.,MBChB,FRCPC

Carol Greene, M.D.Andrea Gropman, M.D.

Richard H. Haas, M.B., B.Chir.Douglas S. Kerr, M.D., Ph.D.Arnold Munnich, M.D., Ph.D.

Robert K. Naviaux, M.D., Ph.D.David Nicholls, Ph.D.

William Nyhan, M.D., Ph.D.Brian Robinson, Ph.D.

Russell P. Saneto, D.O., Ph.D.Eric Schon, Ph.D.

John Shoffner, M.D.Eric A. Shoubridge, Ph.D.

Keshav Singh, Ph.D.Jan Smeitink, M.D., Ph.D.

David Thorburn, Ph.D.D.M. Turnbull, M.D., Ph.D.

Rajiv R. Varma, M.D.Georgirene Vladutiu, Ph.D.Douglas C. Wallace, Ph.D.Kendall B. Wallace, Ph.D.

David Whiteman, M.D.

• An anniversary is often"celebrated" and that may, at first,seem inappropriate for anorganization such as ours. Yet, Isuggest we have much tocelebrate. Mito Ambassadors arevolunteering and Mito Groups arebeing formed all around thecountry. We anticipate – for the2nd year in a row – putting morethan $1,000,000 into researchgrants. More and more peopleare becoming aware ofmitochondrial disease and arewilling to offer support bydonations of time and talent aswell as money.

• Collaboration is almost alwaysbetter than the alternative.Together we leverage each other'stalents to accomplish far morethan we ever could individually.The model we established 10years ago was the right model,and that is also something worthcelebrating.I look to the next ten years when

we might have the opportunity tochange our mission statement. Oh,we'll still provide support tofamilies who are faced with adiagnosis of mitochondrial disease... but wouldn't it be terrific if wewere ensuring "access to effectivetreatments" rather than seeking acure?

The first step towardachievement is the vision.

With all best wishes,

J. Thomas Viall

UMDF MISSIONTo promote research and education

for the diagnosis, treatment andcure of mitochondrial disorders

and to provide support to affectedindividuals and families.

Newsletter EditorKara [email protected]


Living with mitochondrial diseasepresents many twists and turns – amaze of questions. UMDF is pleasedto offer answers to some of thosequestions. All questions andresponses are taken fromwww.umdf.org – Ask the Mito Doc.Please note that information con-tained in Ask the Mito Doc is forinformational and educational pur-poses only. Such information is notintended to replace, and should notbe interpreted or relied upon, as pro-fessional advice, whether medical orotherwise.

Responders for this issue: GregoryM. Enns, MB, BCh University ofCalifornia San Francisco, Stanford,CA and Sumit Parikh, The ClevelandClinic Foundation, Cleveland, OH

The Question is: Explain to me the caution to useTylenol because it depletes glu-tathione peroxidase levels. Mydaughter is 16 months old and isteething. Should I give her Motrininstead?? Please explain andadvise. Response From:Gregory M. Enns, MB, ChB

Glutathione (GSH) is an impor-tant part of the defense system tohelp the body combat stress causedby the production of toxic chemi-cals called reactive oxygen species(ROS) and reactive nitrogen species(RNS), so-called free radicals. Asyou know, mitochondria provideenergy to cells and by doing so,function as a "cellular engine." Inaddition, mitochondria produce freeradicals as a by-product of energyproduction, similar to a car engineproducing exhaust fumes. Carengines that do not work correctlymake an abnormal amount ofexhaust. Similarly, dysfunction of

the mitochondrial respiratory chaincan result in an increased produc-tion of toxic free radicals ("meta-bolic smoke"). Although the glu-tathione system works well todetoxify ROS and RNS under nor-mal circumstances, in cases wherethere is increased free radical pro-duction, this defense system maybe overwhelmed. Acetaminophen(Tylenol) is known to cause severeliver damage in cases of overdose.Acetaminophen is converted into ahighly reactive chemical, abbreviat-ed NAPQI, that depletes GSH inliver cells. Some researchers thinkthat the net result of acetaminophentoxicity is the creation of free radi-cals followed by mitochondrial andcell death. If a toxic dose of aceta-minophen is ingested, GSH levelsfall, allowing NAPQI to causedamage by binding to various pro-teins inside the cell. Following thisdamage, free radicals are formed,leading to a vicious cycle ofincreased mitochondrial and cellu-lar damage. Because aceta-minophen causes GSH depletion,increased free radical production,and mitochondrial damage if takenin overdose, some people haveraised concerns about the possibledeleterious effects this medicinecould have if taken by individualswho have decreased mitochondrialfunction. However, to my knowl-edge there have been no reportsdocumenting acetaminophen toxici-ty in mitochondrial disease. At theusual dose, acetaminophen is likelya safe medication for pain reliefand lowering fevers. Ibuprofen(Motrin) is also a safe medicationwhen taken as directed by a physi-cian.The Question is: My son has MELAS. Our doctor isrecommending Magnesium Orotateamong the other normally pre-scribed vitamins. Has this beenhelpful for others? And, is thereany new research about the use ofMg Orotate?

Response From:Sumit Parikh, MD

Magnesium Orotate is still underinvestigation. It is a drug which isgiven at lower doses for magne-sium supplementation. It was con-sidered as a treatment for mito-chondrial disease since it isconverted to dihydro-orotate in thebody, and an electron donor toCoenzyme Q10 (in theory it helpsCoQ10 work better). It is also apotent anti-oxidant and helps thebody synthesize more DNA precur-sors (purines) This drug is not yetstandard of care for mitochondrialdisease patients since it has notbeen studied enough. Most studiesof this drug have been in animalmodels, and for treatment of heartdisease. In these studies it hasshown varying benefits in decreas-ing cardiac injury in times of stressand increasing exercise tolerance inthose with an injured heart muscle.It has also been studied for treatingmuscle weakness related to "statin"drugs used to treat elevated choles-terol. There are no current US trialsof this medicine for mitochondrialdisease (or for any other disease forthat matter). Dr. Anthony (Tony)Linnane, who spoke at the recentUMDF conference, is aresearcher/physician fromMelbourne, Australia. He studiesthe effects of aging, cancer and car-diac disease on the mitochondria,and is studying MagnesiumOrotate. But again, these studies arenot on individuals with primarymitochondrial disease. So - whilethere are no obvious contraindica-tions to this medicine, it's true ben-efits and toxicities for individualswith mitochondrial disease are notyet known. The only obvious risk isthat of magnesium poisoning. Thishas been reported in the medical lit-erature.

?Ask tthe

Mito Doc


Chapter ActivitiesATLANTA AREA CHAPTERAtlanta, GA

Holiday Fun -

• Atlanta Chapter heldtheir 2nd Annual HolidayParty at the PeachtreeClub in Midtown Atlanta.

15 families (40+ guests)gathered to celebrate theholidays with each otherand Santa!

Upcoming Events:

• April 29 - 2nd Annual Race for Riley 5K Run/Walk and 1Mile Fun Run/Tot Trot. Location: Georgia BaptistChildren’s Home Palmetto Campus. For moreinformation, contact Waynette Peek at 770-463-0714 orvisit www.raceforriley.org.

• September 2006 - watch for more info in the nextnewsletter regarding an upcoming Fun Walk at PiedmontPark. Event organizer - Sheri Seldes, 404-885-4882 [email protected].

• October 23, 2006 - 3rd Annual Fore-A-Cure GolfTournament at Standard Club in Duluth, GA. For moreinfo, please contact Chris Swinn at 404-817-0999.Special Events - Thank YOU!

• October 2005 - D. Morgan’s Restaurant (Chef DerekMorgan pictured withSherry) gave food awayand asked for donations inhonor of Sherry Mathisonat the Art Festival indowntown Cartersville,GA. More than $650 wasdonated to UMDF.Thanks Sherry and ChefDerek!

• Meineke Car Care Center in Cumming, GA ran a coincollection and raised $205 in honor of two-year-old MeganSheridan.

• The Ingram Family took 4th Place at the Polk CountryFair in Cedartown, GA, with their mitochondrial diseaseawareness booth and UMDF received their $60 prize.

President: Chris SwinnPhone: 770-270-5337Email: [email protected]

For activity/info for Southern California and Arizona Chapters, email [email protected] or [email protected]

Want to Get Involved?!Contact your local chapter or group today. Chapters and Groups will continue to grow with your HELP.

YOU can make a difference.

Upcoming Events:• Saturday, May 7 - Mito Hope Run in North Haven, CT,in honor of Nicholas Pisani. For more info, contactMary Pisani at 203-287-0655 or [email protected].

• Saturday, May 13, 2006 - 6th Annual MatthewDudgeon Memorial Walk, 7K Run, and Dinner Dance -partial proceeds benefit UMDF. Run begins at 8:30amwith walk at 9:30am at Chester Train Station in Chester,NY. Dinner dance to be held at Brookside Manor inMiddletown, NY at 7:00pm. For more info, contactGina Dudgeon at [email protected] or visitwww.themattyfund.org.

NEW YORK METRO CHAPTERNew York Metro area

President: Mary Pisani (North Haven, CT)Phone: 203-287-0655Email: [email protected]

Fundraising Tips – RE: eBay and WalmartUMDF has developed a relationship with eBay that can help raise dollars to support the UMDF mission. Did you

know that Walmart can provide matching dollars for your next fundraiser? For more information, contact Jodie Tabano at 412-793-8077, ext. 106 or jodie@umdf .org.

Events/Fundraisers:• Special Thanks - The Indiana ChapterPack the House event was held February25th. Joint promotion between the IndianaICE and Penn Station created tons ofexposure for UMDF. More details tofollow. Special thanks to Sue Ann Bubefor her tireless dedication to UMDF.

Miles for Mito 2006 - Tentative Route - • June 10 - Start Indianapolis, IN (Riley Hospital forChildren) - Follow US 31 through Indiana. Possible cities:Columbus, Seymour, and Scottsburg.

• Route will follow low traffic highways and state roadsparallel or near US 31 or I-65 through Kentucky. Possiblecities: Hodgenville, Munfordville, Bowling Green, andFranklin.

• Route will continue into Tennesee -possible cities: Westmoreland, Harsville,Woodbury, McMinnville, Monteagle/Sewanee and South Pittsburg.

• Following state roads in the vicinity of US24/US 27 and the Silver Comet Trail, thebicycle riders will possibly go through these

cities on their way to Atlanta, Georgia:Summerville, Rome, Cedartown, Rockmart,and Marietta.

• June 16 - Arrive in Atlanta at the 2006 symposium.

If you live near any of the above cities and would like tojoin the riders or help with promoting the event, please

contact UMDF at 412-793-8077 or email [email protected].

• Looking Ahead - July 10, 2006 - 2nd Annual IndianaChapter Golf Outing at the Hawthorns Golf & CountryClub in Fischers, IN. (Indiana Chapter)


DELAWARE VALLEY CHAPTERPhiladelphia, PA

President: Maripat ShellyPhone: 215-256-0273Email: [email protected]

Chapter Activities

Mark your CalendarsLooking Ahead

Saturday, September 9, 20066th Annual “Go! For Mito” Shelly’s Heroes Walk Run

at the Philadelphia Art Museum.

INDIANA CHAPTERIndianapolis, IN

President: Sue Ann BubePhone: 317-894-9099Email: [email protected]

June 10-16, 2006

Miles for MitoRides Again

Special Thanks to Bob Thomas for organizing the Miles for Mito each year – creating awareness about mitochondrial disease along their route is PRICELESS!! Visit www.umdf.org/milesformito!

•3rd Annual Brew at the Zoo - Saturday, July 29,2006 at Elmwood Park Zoo, Norristown, PA.Tickets are $35. For more info, call 610-275-2775, email [email protected] or logonto www.BrewAtTheZoo.net.

NEW ENGLAND CHAPTERBoston, MA

President: Bridget WillisPhone: 413-593-5920 (Beverly Ingram)Email: [email protected]

Upcoming Events• May 20, 2006 - 1st Annual Golf Outing for UMDF NewEngland Chapter at Easton Country Club in Easton, MA.1:00pm shotgun start. Contact Bill Naughton, eventchairman, at 781-982-9350.

• August 17, 2006 - Friends of Cameron picnic in honor ofCameron Genie at the Chicopee Falls Moose Family Centerin Chicopee Falls, MA.

Special Thanks• Thank you to our friends in the Southampton, MA areafor hosting a skate-a-thon raising $388 for UMDF.

• Barbara Howard, neighbor to Ryan Shea and hisfamily, raised $770 through a door-to-door solicitationcampaign. Thank you, Barbara, for your continuedsupport!!

• Donna Veccharelli and Dan Rodriquez at PACtelevision in Plymouth, MA, continue to providevaluable media coverage for the New England Chapterand UMDF as a whole. Awareness is PRICELESS!!!

In the NewsMaripat Shelly winsPhiladelphia 76ers

Hometown Hero award.See page 19 for more info.

North Canton, OH created a 52 page Jewish holiday cook-book to raise funds and awareness for mitochondrial disease.Hannah donated $1,000 to UMDF from her cookbook sales.Well done, Hannah!• Thank you Carrie Roberts (friend of Amy Kalk) for hostinga Southern Living Party in honor of Molly Kalk and raising$228.42.


Chapter Activities

Special Thanks -• The United Mitochondrial DiseaseFoundation - Ohio Chapter wouldlike to recognize MicroCorp forchoosing UMDF as the 2005Charity Benefactor for the One-on-One™ Conference in October atStone Mountain Resort in Atlanta.Once they became aware of theUMDF mission, MicroCorp quicklystepped up to the plate and gener-ously invited UMDF to use theirannual One-on-One™ conferenceas a platform to raise in excess of$1,200 and raise awareness of ourmission. We sincerely appreciateand respect their compassionate andproactive efforts.• As part of a Bat Mitzvah project,Hannah Roberts (pictured right) of

OHIO CHAPTERCleveland, OHPresident: Bill HodgesPhone: 440-235-2451 Email: [email protected]

Mark Your Calendars!5th Annual KFC/UMDF

5K Run/1 Mile Walk - One Step Closer to a Cure Saturday, June 3, 2006

Marty Lyman, Ohio chapter memberand UMDF Trustee, pictured with

Brad Miehl President / CEO ofMicroCorp at the 2005 MicroCorp

One-on-One™ Conference

Take Me Out to the Ballgame andGet a Haircut to Benefit UMDF

New Image Haircutters, ofWillowick, Ohio, will once again hold

a cut-a-thon in honor of JonathanKucaric during the following Lake

County Captains games :Friday, April 28, 2006Friday, May 26, 2006Friday, June 23, 2006Friday, July 28, 2006

Friday, August 25, 2006Head out to the ballpark with the

family, stop by New Image Haircuttersand support UMDF!

UMDF Ohio Chapter Photo Project

“The Many Faces of MitochondrialDisease”

The Ohio Chapter is creating aportable photo board of Ohioansaffected by Mitochondrial Diseases.If you have someone that you wouldlike to see included, please submit aphoto and brief bio to be included inthe photo board. Please include anexact diagnosis if available and infoabout how this disease affects theindividual.

The board will be on display at the5th Annual "One Step Closer to aCure" Race and all other OhioChapter events. This board will bean excellent way to spread awarenessof Mitochondrial Diseases and tofocus some attention on the diversityof the symptoms and effects. Pleasemail your submission to: OhioChapter, P.O. Box 39416, Solon,Ohio 44139.

Upcoming Events• April 29, 2006 - 3rd Annual FamilySpaghetti Dinner from 4-8pm atPilgrim Lutheran Brethren Churchin Mentor, OH. The dinner ishosted by the Arnold and Keeneyfamilies in honor of Maiya andSadie. For info, call Jack at 440-968-3956.

KANSAS CITY CHAPTERKansas City, MO

President: Pam JohnsonPhone: 913-631-3070Email: [email protected]

• Looking Ahead - June 24, 2006 - 3rd Annual Mito-What? 5K Run/Walk One Step Closer to a Cure atCorporate Woods Founders Park, Overland Park, KS. 5Krace begins at 8am with 1 mile walk at 8:15am. For moreinfo, contact Theresa Edwards at 816-587-1375 or BrianJohnson at 913-631-3070.• Thanks to a generous donation this past holiday, Santawas able to visit the home of each affected child of

Kansas City Chaptermembers. Kids told Santawhat they wanted andmagically, a few items fromtheir list appeared for themto open. Pictured right isKierstin Honeycutt withSanta. What a greatexperience for the kiddos!

cially Adrienne) would graciouslylet the UMDF disrupt their every-day living (sometimes dinner andice cream were a bonuses to work-ing there).

... that Chuck Mohan wasalways a “hands on” leader? Notonly was he vital to the day-to-daybusiness over the past 10 years, hewillingly packed trucks and hauledmaterials for fundraisers, assem-bled (and unassembled) office fur-

niture, volunteered at events (pic-tured above with Stan Davis andJohn DiCecco working at the OhioChapter run), and he even playedSanta for the Arizona Chapter’sholiday party one year.

... Chuck traveled all over theU.S. during his tenure – attendingmore than 100 events, meetings,and fundraisers? He volunteeredhis time and contributed financial-ly, in-kind and out-of-pocket.Trips to fundraisers, like the St.

Louis Walk/Run (pictured above),were always a highlight for Chuck.


hospital visits to reach a diagnosis.Four years later, Gina was finallydiagnosed with M.E.L.A.S.(MitochondrialEncephalomyopathy LacticAcidosis and Stroke-LikeSyndrome).

In 1994, Chuck reluctantly tookover the COX Foundation, whichwas a fledgling organization at thetime. COX is also a form of mito-chondrial disease. He felt that theinformation he obtained throughrunning this foundation wouldprove useful in the care of hisdaughter and he could help othersat the same time. Unfortunately, onJanuary 20, 1995, Gina MarieMohan lost her battle with mito-chondrial disease.

Determined to help other par-ents, Chuck lobbied other mito-chondrial disease non-profits tojoin forces and form a united frontin the quest for a cure. The UnitedMitochondrial Disease Foundationwas officially born in 1996 and hasbeen successfully growing into themost recognized foundation dedi-cated to mitochondrial diseaseresearch and providing support topatients and families in the UnitedStates.

What started in the basement ofa father seeking answers is now afully staffed, professionally runorganization. Chuck Mohan led theway as chairman.

Through his leadership, 10years later, the UMDF has…

…helped thousands of patientsand families by providingresources to better care forthemselves and/or their lovedones.…raised more than $2,700,000to support mitochondrial diseaseresearch.…organized eight internationalconferences to encourage theexchange of information andcultivate networking amongphysicians, researchers, patientsand families.…developed nine chapters andmore than 20 Mito Groupsacross the United States to helpfamilies on the local level.

Did you know ... ... in 1996, Chuck and Bob

Bolewitz rode motorcycles toCorinth, MI, to meet with CharlesWilbanks to discuss a possiblemerger between the NationalLeigh's Disease Foundation and theUnited Mitochondrial DiseaseFoundation? Mr. & Mrs. Wilbankscould not believe that they rode amotorbike all the way fromPennsylvania. Pictured below isNick Rillo, Bob Bolewitz, and theWilbanks.

... the first UMDF office was an8 x 8 room in Chuck Mohan’shome then later moved to his base-ment? Kara Strittmatter and ToniBeasley, as the first UMDFemployees, spent many hours there– sometimes days, sometimesevenings – and the Mohans (espe-

Charles A. Mohan, Jr. - More than 10 Years Toward the Quest for a CureContinued from page 1

Continued on the next page

To accomplish great things, wemust not only act,

but also dream; not only plan,but also believe.

- Anatole France

Meeting the fami-lies is very specialto Chuck and, as theChair Emeritus, hewill continue to vol-unteer his time tooutreach efforts –fundraising events,

special events, physician meetings, and more.Below, Chuck speaks to families in South Carolinain January of 2006.


Nick Rillo, of Chicago, Illinois,served on the UMDF Board since1996. He designed the database inwhich UMDF tracks its members,donors, and other supporters. Hehas chaired the DatabaseCommittee and provided insight ontechnical concerns. Nick is a com-puter consultant and manages com-puter services for the Skin DiseaseEducation Foundation.

Nick spent countless hours working with the UMDFstaff and computer con-sultants to guide theoffice through numeroustransitions over theyears – web siteupdates, databaseupgrades, and muchmore.

The UMDF was veryfortunate to have Nick Rillo as part of the computerteam. He also had the pleasure of watching the officegrow first-hand. Pictured above, Nick works with KaraStrittmatter in the first office space, the Mohan’s base-ment, as consultant Bob Bolewitz looks on. Those werethe days! Thanks Nick!

Special Thanks Nick Rillo

Robert PolskyBob joined the Board in 2006 and

has previously served on the UMDFGovernance Committee. Bob hasbeen active with the UMDF since1998. He developed and runs theannual fundraiser/beer tasting event,“Brew at the Zoo” for the DelawareValley Chapter. Bob is a chemical engineer with theParsons Corporation's Life Sciences Division where hespecifies and evaluates custom designed process equipmentfor the pharmaceutical and biotechnology industries. Boband his wife, Lisa, have three beautiful children, Amanda(diagnosed with Mitochondrial Disease in 1994), Abigaleand Audra. The family is also expecting a new addition inMay of 2006.

To keep UMDF members connected to our boardvolunteers, we will “spotlight” our trustees from time totime in the Mitochondrial News. For our firstSpotlight, we will feature our two newest members,Marty Lyman and Bob Polsky.

Marty LymanMarty Lyman is the father of

Caroline Elizabeth Lyman who isseverely affected with aMitochondrial disease. Marty andhis wife, Jennifer, have beenactively involved with UMDF

since 1998. Jennifer is the past President of the Ohiochapter of UMDF, and together they have worked onmany successful committees and projects for the bene-fit of UMDF. Included in the chapters accomplishmentsare fundraising efforts totaling in excess of $500,000,awareness campaigns for both the general public andthe medical community, and support programming foraffected individuals and family members. Marty is thePresident of Compass Solutions, a company he found-ed, which designs and implements telecommunicationand internet solutions for businesses. Jennifer andMarty also have another daughter, Abigail who is unaf-fected by Mitochondrial disease. The Lymans live inNortheast Ohio.

Spotlight - UMDF Board Members

If you would like bios on other UMDF boardmembers or staff, please visit www.umdf.org

(http://www.umdf.org/about_umdf/generalinfo.aspx).

Thank you Chuck, Adrienne and Chuckiefor being such a vital part of the UMDF

Family. Chuck, you may not be chairmanbut, we know where you live and yourwork (as it is for all us) is not done!!!

Charles A. Mohan, Jr. continued


April 22, 2006 - 3rd Annual Family Fun Day at the Shrineof Our Lady of the Snows in Belleville, IL. For more info,go to www.umdf.org/stlouisrace or call Joni Schnitzler at618-624-0216.April 28, 2006 - 2nd Annual Chris Schindler MemorialCutting at Washington County Fairgrounds, Brenham, TX.For info, contact Joe Schindler at 713-542-2843 or [email protected] 29, 2006 - Race for Ellie (In honor of Ellie Kovalcik)at Library Park in Powell, OH. For more info, go towww.premierraces.com.April 29, 2006 - 2nd Annual Race for Riley 5K Run/Walkand 1 Mile Fun Run/Tot Trot (Atlanta Chapter)April 29, 2006 - 2nd Annual Wine Tasting Event, Medford,NJ. The event is in honor of Rachel Kindbom. For moreinfo, contact Sharon Kindbom at [email protected] 29, 2006 - 3rd Annual Family Spaghetti Dinner host-ed by the Arnold and Keeney families in honor of Maiyaand Sadie.(Ohio Chapter)April 29, 2006 - Break the Barriers Dinner hosted byBrittany Wilkinson, a mito teenager in Fresno, CA. Formore information, contact Brittany at 559-299-1767.April 30, 2006 - Golf Outing (Brighten Crest Golf Course) -also hosted by Brittany. For more information, contactBrittany at 559-299-1767.May 6, 2006 - Silent Auction & Art Show in memory ofCarolyn Russell at the Mitchell Auditorium, Duluth, MN.For more info, contact Mary Russell [email protected] 7, 2006 - Mito Hope Run in North Haven, CT (NYMetro Chapter)May 13, 2006 - 6th Annual Matthew Dudgeon MemorialWalk, 7K Run, and Dinner Dance - partial proceeds bene-fit UMDF. For more info, visit www.themattyfund.org.(New York)May 13-21, 2006 - 6th Annual Kites for Kristen at St.Daniel of the Prophet School in honor of KristenCharleston in Chicago, IL. For more info, call PatCharleston at 773-229-0605.May 19, 2006 - 2nd Annual Wipe Out MitochondrialDisease Walk at Merrill Crest Park/Bethesda Elementaryin Waukesha, WI. 1 Mile Walk and 5K Run in memory ofSam Juhlmann. For more information, contact DebGrabow, Bethesda PTO at 262-574-1550.May 20, 2006 - 1st Annual Golf Outing for UMDF NewEngland Chapter at Easton Country Club in Easton, MA.Contact Bill Naughton at 781-982-9350. (New EnglandChapter)

May 25, 2006 - 9th Annual Pittsburgh UMDF GolfOuting at Churchill Valley Country Club. For moreinfo, contact Jodie at 412-793-8077 or [email protected] 25, 2006 - 2nd Annual Friends of AJ (AlbertJacob Floriano IV) Dinner Dance & Raffle in FallRiver, MA.June 3, 2006 - 4th Annual Pittsburgh One Step Closerto a Cure 5K Run/1 Mile Walk at North Hills BoatHouse in North Park, Pgh, PA. For more info, contactGillian McTiernan at 412-793-8077 or [email protected] 3, 2006 - 5th Annual KFC/UMDF 5K Run/1 MileWalk at Forest Hills Park in Cleveland Heights, OH.For more info, visit www.umdfohio.org. (Ohio Chapter)June 24, 2006 - 3rd Annual Mito-What? 5K Run/WalkOne Step Closer to a Cure at Corporate WoodsFounders Park, Overland Park, KS. For more info,contact Theresa Edwards at 816-587-1375 or BrianJohnson at 913-631-3070. (KC Chapter).June 14-17, 2006 - Atlanta 2006: Mastering theMitochondrial Maze in Atlanta, GA at the SheratonAtlanta Hotel on Courtland Street. Registrationbrochures have been mailed - call 412-793-8077 ifyou have not received a brochure!June 10-16, 2006 - Miles for Mito will travel fromIndianapolis, IN to Atlanta, GA. See Indiana Chapterpage for more detail! (Indiana Chapter)July 10, 2006 - 2nd Annual Indiana Chapter GolfOuting at the Hawthorns Golf & Country Club inFischers, IN. Call Mike Hanlon, event chair at 317-858-6356 or visit http://umdfgolfouting.golfreg.com(Indiana Chapter)July 17, 2006 - 7th Annual Ohio UMDF Golf Outing atKirtland Country Club in Willoughby, OH. For moreinfo, please contact the event chair, Stan Davis, at216-581-0000.July 29, 2006 - 3rd Annual Brew at the Zoo atElmwood Park Zoo in Norristown, PA. (Del ValChapter)August 17, 2006 - Friends of Cameron picnic in honorof Cameron Genie at the Chicopee Falls MooseFamily Center in Chicopee Falls, MA. (New EnglandChapter)August 19, 2006 - Shadow Woodstock in Auburn, OH.Contact Ohio Chapter for more info.

Mark your Calendars See pages 5-7 for more details on chapter events


tion allows, we now wish to discuss our findingswith the UMDF membership.

In order to understand the results of this study, itis important to have some familiarity withMitochondrial Genetics. Mitochondrial disorderscan be caused by mutations (genetic changes) ineither the DNA that resides inside the mitochondria(mtDNA) or the DNA in the nucleus (chromosomes).The DNA in the nucleus is the "regular" DNA youprobably heard much more about in your biologyclasses in school. mtDNA is inherited only from themother, not from the father. Thus,unless there was a recent mutation, achild carries the same mtDNA as doeshis mother, brothers, sisters, maternalgrandmother (mother's mother), andmaternal aunts and uncles. These indi-viduals who share the same mtDNAare called "matrilineal" relatives.When a mtDNA mutation is inherited from thatpatient's mother, the disease is said to be "maternallyinherited". Because of the unique and complicatednature of mitochondrial genetics, matrilineal rela-tives carrying a mtDNA mutation are frequentlyaffected with symptoms, although often the diseaseis mild and can be very different from that found inthe patient. Thus, a typical family with a mtDNAmutation might include a child with mental retarda-tion and seizures, a sister with cardiomyopathy(heart muscle weakness), a mother with leg weak-ness and fatigue, and a maternal grandmother withdeafness and hypothyroidism - all because of thesame mutation!

Mutations in the chromosomes ("regular" DNA)that cause mitochondrial disease can be inherited inmany different ways. However, in most cases theinheritance is "autosomal recessive", in which bothparents are healthy carriers. In most cases, thepatient is the only affected family member, althougha brother or sister may also be affected.

Although the method is not full-proof, we can usefamily history data to determine which families areprobably maternally inherited (thus, likely having amtDNA mutation related to their medical problems).This is because, if the disease in a family is mater-nally inherited, one would expect disease manifesta-tions to be present in the matrilineal relatives (moth-er, mother's brother, mother's mother, etc.) far moreoften than in the non-matrilineal relatives (father,father's brother, father's mother, etc.). Non-maternal-ly inherited families should not demonstrate this"maternal bias". Our job was made more complicat-ed because no family is perfect, and non-mitochon-

drial-related disease is expected to be randomly dis-tributed among the relatives in maternally and non-maternally inherited families alike.

In this study, we received complete questionnaireresponses from 171 families, and 55 of them (one-third of the total) were assigned by us to the "proba-ble maternally inherited" (PMI) group.

The group assignment criteria were complicated,and involved a review of the entire family historyprovided. In almost all PMI cases, the mother and at

least one other first or second-degree matrilineal rel-ative were reported as being affected with at leastone condition on a list of potentially-mitochondrial-disease-related conditions (Table 1), while there werefar fewer of these conditions among non-matrilinealrelatives.

Most of the remaining families (111) did notappear to have maternal inheritance and did not meetour criteria. While many of these families likelyhave nuclear DNA mutations with autosomal reces-sive inheritance, there are other possibilities includ-ing rare inheritance patterns, new mtDNA mutations(not present in the mother), and misdiagnoses (notmitochondrial disease). We assigned these 111 fami-lies to the "probable non-maternally inherited"(PnMI) group. Finally, there were 5 families that didnot fit the criteria of either of the groups, and there-fore were not placed into either group. In order toavoid a logical circle, group assignment for eachcondition was performed independent of the presenceor absence of that condition in that family. Thus, forexample, when migraine was being evaluated, fami-lies were assigned to either the PMI or the PnMIgroup based upon the presence or absence of theother 11 conditions, excluding migraine.

The patients themselves had generally undergonemultiple tests before the diagnosis of a mitochondrialdisorder was reached, including in most cases musclebiopsy and DNA testing. As expected, almost all(exactly 95% of both the PMI and PnMI groups) hadsome kind of nerve (including brain) or muscle dis-ease. This indicates that both groups had patients that

Results of the "Families Dealing with Mitochondrial Disease" On-line QuestionnaireContinued from page 1

Anxiety Disorder Depression (clinical) HypotoniaBowel Disease Episodic/Cyclic Vomiting Kidney DiseaseCardiomyopathy Hypoglycemia Migraine HeadachesDeafness Hypothyroidism Seizures

Table 1. Potentially-mitochondrial-disease-related conditions used todefine the probable maternally inherited (PMI) group



Fundraisers

• Friends of the Rudy BurkiInvitational Classic (RBIC) GolfTournament in Burlington,Ontario, selected UMDF toreceive $1,449.11 in honor ofLindsay Firlotte -- Hal Firlotte isa longtime player in the RBIC.Thank you Friends of RBIC andthe Firlotte Family!

• LSI Dress Down Day inDecember in Coraopolis, PA,raised $1,149.14 in honor ofKendall Obley.

• House of Horrors - Lauren Allredand University of South Carolinastudents raised $432 byvolunteering time at the Jayceehaunted house. Excellent!

• Pampered Chef - In memory ofHeidi Marie, Cindy Thompson,friend of Heidi’s mom, NormaGibson, hosted a fundraisingevent and donated $276 toUMDF.

• Max & Erma’s UMDF Day - Inhonor of Ellie Kovalcik, family

and friends of Ellie joinedtogether at Max & Erma’s andraised more than $500. Eatingout never sounded so good!

• The Red Hat Society donated $80in honor of Turner Trimbath, ofDunbar, PA.

• Friends and family of FranRussell contributed $520 toUMDF to celebrate Fran’s 60thBirthday and to honor thememory of Carolyn Russell,Fran’s daughter.

• The Buffalo Public SchoolsNative American Magnet School19 contributed $215 in memoryof Leah Janusz. GrandmotherElizabeth Scholz is a member oftheir school community.

• Entertainment/Enjoy Book Sales -thanks to Ron Miklos, of PlumBoro, PA, the UMDF received$3,000 in profits from sales thisyear. Thanks, RON!!

• Charity Basketball Game - BrianWerner, 4th grade teacher atRamsey Elementary inMonroeville, PA, has organizedthis charity game for the past sixyears and chose UMDF andNational Alliance for AutismResearch (NAAR) as thebeneficiaries this year. Teachersplayed against local VIPs andRamsey cheerleaders (picturedabove) provided entertainmentthroughout the evening. Theevent raised more than $2,000 forUMDF! Thanks Brian andeveryone at Ramsey for helping!

Gifts ffrom tthe HHeart - TThank YYou AALL

2nd Annual Ally BrunkMemorial Run Raises $4,000

To honor the memory oftheir sister, Allyce Daniel

Brunk, Laynee and Carson Brunkwear their event t-shirts with greatpride. Thank you, Brunk Family!!

Bet on Baylee Deals Out AnotherSuccessful Event Raising more

than $10,000Pictured right, Baylee

Thompson is surrounded bysister Jade and her two cousins, Peytonand Jordyn at the 3rd Annual Bet onBaylee Casino Night in Roseville, OH.More than one hundred came out to get abetter “deal” for Baylee and others battlingmitochondrial disease. Thank you, Jodyand Gary, and your entire circle of friendsand family for their continued support!

This past winter, Baylee and her mom,Jody, also had the privilege to meet OhioState University Football Senior, AJ Hawk,and receive numerous OSU items for theirauction -- such as a football signed by allthe senior players. After meeting Baylee,AJ walked away proudly wearing a UMDFEnergy Band.

If you have an event announcement or an idea for an articlefor the Mitochondrial News, please email [email protected].

We want to hear from YOU!

For information on starting a fundraiser in your area, [email protected].


Zachary Foundation Donates$30,000 to UMDF!

On October 16, 2005, more than500 people came to run, walk andsupport research for Mitochondrial

Disease at the Second AnnualZachary Foundation Walk/Run.

The Zachary Foundation wasfounded in July 2004 to support

research for MitochondrialDisease and in particular Pyruvate

Dehydrogenase Deficiency.Zachary is 8 years old and –

despite his disease – is a fun,active, and loving child. Zachary issupported by a large community

of hard-working friends and familyin the Marlboro, New Jersey area– including his brother Benjamin

and sister Rebecca (picturedabove with Zachary, parents

Michael & Rhonda Friedberg, andUMDF CEO/ED, Tom Viall). TheZachary Foundation has donated$30,000 to UMDF this fiscal year– from the proceeds of this event

and an annual golf outing.Thank you to all who have made

these events a success – especially Zachary’s family!

Special Thanks to MOREFundraising Stars

• In memory of Paul Buczinski, ofMurrysville, PA, CatherineFederline and Monica Buczinskidonated their birthday money toUMDF. Thank you Catherine forsending $81 and Monica for the$380. Happy Birthday, girls!

• Emily Fischer and her fiancé, Joe,hosted some special activities atthe Nessun Dorma in Milwaukee,WI – raising $500 in memory ofSam Juhlmann.

• In lieu of wedding gifts, Patrickand Karon Sullivan, of Florida,accepted contributions to UMDFin honor of Sam and ZacharyJuhlmann. More than $4,000 wasraised. To read their story, visitwww.umdf.org/sammy.

• The Missouri Senior AmericaCameo Club donated $250 toUMDF in honor of Bert Cohen,grandparent of a child withmitochondrial disease.

• In honor of Michael Pastorelli(Ron & Peg Donohoe’s grandson),staff and volunteers of St. CharlesParish and School in Woburn, MAcontributed $1,570 to UMDF aspart of their annual ChristmasGrab Bag exchange fundraiser.

• Texas Hold ‘em at Bella Notte inPittsburgh, PA raised $1,335 inmemory of Gina Marie Mohan –special thanks to the SunseriFamily!

• In honor of Hailey Charbonneauof Ashburnham, MA, patrons atthe Horse Shoe Pub were charged$1 every time their cell phonesrang – $200 was donated toUMDF. Can you hear me now?You bet!

FundraisersOutstanding Youthin Action

Nina QuinnAnother outstanding youth comes to

mind: Nina Quinn, of Monroeville,PA (pictured above with Chuck

Mohan) had to convince her class tochoose her “disease project” and

her charity. Nina chose UMDF andmitochondrial disease as her projectand did an excellent job gatheringfacts, which paid off. The class

chose her project and raised morethan $300 to benefit UMDF.

For Lorenzo

The Scavio Family of New Yorkcontributed $10,000 to UMDF in

memory of their first-born sonLorenzo Gregory Scavio, who lost

his battle with mitochondrialdisease on April 10, 2005. Thefamily raised money through

bracelet sales.

Matthew Johnston & FriendsOn December 11, Tova & TopherSido ran the Dallas White Rock

Marathon to honor the memory oftheir son and daugher, Charlie and

Louisa. The Sidos collected pledgesand raised more than $7,000.

Matthew Johnston, a neighbor of theSidos, wanted to collect pledges aswell and then talked his friends into

joining the cause.And so they did -- pictured from left

to right, Schaffer Ochstein, CameronCasey, Holden Novak, James

Graass, and Matthew Johnston ranthe marathon and collected more

than $1,000 in pledges. Outstandingjob, guys!


had fairly severe, and typical, mito-chondrial disease.

However, it was the symptomswithin the adult relatives that werethe real focus of this project. Aswe believe that most of the PMImothers carry mtDNA mutations,they might be expected to havesome symptoms related to this.This is not the case with either thePnMI mothers or the fathers ineither group. This is exactly whatwe found, as is shown in Table 2:

Bold font highlights data frommothers in the probable maternallyinherited group, corresponding toindividuals expected to exhibitsome degree of mitochondrial dys-function.

Based upon personal experience,in PMI mothers, "arthritis" is oftenmuscle cramps, and "heart dis-ease", when not cardiomyopathy, isoften an arrhythmia, especiallytachycardia (rapid heart rate).

The frequencies of the otherconditions listed in Table 1 werelow (< 10% in all groups), andwere not statistically more com-mon among the PMI mothers.

As can be seen in Table 2, boweldisorders, migraine headaches andclinical depression are very com-mon among the mothers in families

with probable maternal inheritance,each being reported in over one halfof the mothers. Although the num-bers in the other three categoriesmay seem large, bowel disorders,migraine and depression are verycommon conditions in general, andour numbers are consistent with theknown frequencies of these condi-tions in the population at large.Our data regarding bowel disorders,migraine and depression is veryhighly statistically significant (forthose that are interested, p valuesvary between 0.0004 and0.00000001). These conditionswere reported frequently in thepatients as well, but in many casestheir presence was likely overshad-

owed by the more "serious" neuro-muscular disorders.

Our results for the extended rela-tives demonstrated the same find-ings: that the conditions listed inTable 2 were far more frequent inthe maternal grandmothers, auntsand uncles in PMI families, thoseindividuals who presumably sharethe same mtDNA mutations as dothe patients. Among the PMImaternal aunts and uncles, the mostcommon conditions were, in order:depression, anxiety, bowel disordersand migraine.

What does this study tell us?Take another look at the condi-tions in Table 2. Among mater-nally inherited families, you (thefamilies) are telling us (the healthprofessionals) that the most com-mon problems that you sufferfrom are conditions that causepain and distress, but which willnot show up on a physical exami-nation or laboratory testing.These conditions were reportedseveral times more frequently inthose individuals that presumablycarry mtDNA mutations (mothers,and maternal aunts, uncles andgrandmothers in probable mater-nally inherited families). Thus,we have come to the conclusionthat the mtDNA must be predis-posing (increasing the risk)towards the development of theseconditions.

Migraine and bowel disorders(dysmotility: including diarrhea,constipation, abdominal pain,heartburn [reflux], etc.) are wellestablished as being frequentmanifestations of mitochondrialdisease. However, depression andanxiety are not. Thus, takentogether, the most novel findingof our study is that the mtDNAcan increase the risk for develop-ing clinical depression and anxi-ety disorders. This is why thestudy is published in a "psychi-atric" journal. This finding hasmany implications, which are dis-cussed in the next article entitled"Depression and Anxiety inMitochondrial Disease".

Turning back to some of the"physical disease" manifestationsthat demonstrate maternal inheri-tance in our study, some of youmay now be thinking, "So, mymigraine headaches, stomachpains, constipation, and aches andpains are all due to mitochondrialdisease?" Well, "yes" and "no".

Table 2. Clinical findings in the parents of patients

Probable Probable Probable ProbableMaternal non- Maternal non-Inheritance Maternal Inheritance Maternal

Inheritance Inheritance

Mothers Mothers Fathers FathersBowel disorders 60% 16% 16% 12%Migraine 54% 26% 12% 9%Depression (clinical) 51% 12% 9% 12%Arthritis 39% 19% 11% 7%Anxiety 38% 10% 12% 10%Heart problems 35% 10% 11% 11%Hypoglycemia 24% 7% 2% 5%Cardiomyopathy 18% 1% 0% 3%

Results of the "Families Dealing with Mitochondrial Disease" On-line QuestionnaireContinued from page 11



These conditions are "multi-factori-al", meaning that they have manycauses, only one of which is "mito-chondrial" in nature. Therefore, theoptimal therapeutic regimentaddresses all potential causes, bothmitochondrial and non-mitochon-drial alike. For example, inmigraine headache, combining tra-ditional non-mitochondrial thera-pies (e.g. the avoidance of flashinglights and certain processed foods,and the use of various prescriptionand non-prescription drugs, includ-ing caffeine, ibuprofen and/oramitriptyline) with "mitochondrialtherapies" (e.g. co-enzyme Q10, L-carnitine, and the avoidance ofhigh-energy demand situations,especially fasting) can be a power-ful combination in the treatment of"mito relatives" with migraine. Ofcourse, therapy is individualizedand depends on many factors,including the frequency and severi-ty of symptoms as well as the pres-ence of other medical problems andthose drugs already taken. So,before doing anything, it is impor-tant to discuss it first with yourdoctor (and I do realize howimpractical this recommendationcan be, but it is nonetheless impor-tant).

We wish to give special thanks tothe families that participated in thisresearch, and to the UMDF for theirhelp and the use of their website.

Editor’s Note: Special thanks toDr. Boles and Brittany Burnett forsharing their findings. TheUMDF’s intent is to keep youinformed and since the project’sdata was collected through theUMDF web site, we were pleasedto see the results. As always, weask that you continue to discuss anydiagnoses, treatments, or medica-tions with your personal physician.

Results of the "FamiliesDealing with MitochondrialDisease" On-lineQuestionnaireContinued from page 14

Vacation Toward a Cure

1st Prize• Round trip air transportation for two to any American

Airlines destination in the contiguous 48 states, courtesy ofAmerican Airlines and $1,000 in American ExpressTravelers Cheques.

2nd Prize• A two night stay and complimentary spa passes to the

Catamaran Resort Hotel in San Diego, CA and $500 inAmerican Express Travelers Cheques.**

3rd Prize• Luggage Set** Please note that the 2007 UMDF Conference will be held at the

Catamaran Resort Hotel!

Three Chances to Win ...

Drawing Date: June 16, 2006

Drawing will take place at the Atlanta 2006: Mastering theMitochondrial Maze at the Sheraton Atlanta Hotel

$5 per ticket$25 for book of 6 tickets

For more information or to order tickets, please contactUMDF at 412-793-8077. Contest rules are available on the

UMDF web site and/or noted on the raffle tickets.

Individuals who sell ten books of tickets will receive a UMDF Polo Shirt!

All proceeds to benefit the United Mitochondrial Disease Foundation.

Attention Groups and Chapters:See Page 21 for incentives!

Exclusive Airline of the Vacation Toward

a Cure Raffle


The United Mitochondrial Disease Foundation has not forgotten and deeply appreciates each and every individual,organization, and corporation that has generously donated money to support our mission. While we would like to list ALLour donors in the newsletter, please understand that it would be difficult to do so. If we did, we typically have more than8,700 names that donated $1-99 (THANK YOU); 2,000 names that donated $100-249 (THANK YOU) and more than 550names that donated $250-499 (THANK YOU). We know who you are and you are appreciated. Your contributionscontinue to make a difference in the lives of those affected with mitochondrial disease.

The following acknowledgements include donations of $500 or more (entered into the system) between July 1, 2005to December 31, 2005. If your name or company’s name is not listed, please contact [email protected]. We continue tomove through a database transition and we need to hear from you if our information is not accurate!

Benefactor $10,000 and overCorporations, Organizations and

FoundationsBlack & White ProductionsStar Fuel Centers, Inc.William Wright Family Foundation

Individual/FamiliesRhonda & Michael Friedberg Thomas & Elizabeth Hefferon John & Bonnie Osher Bob & Irene Sheridan

Patron $5,000-9,999Corporations, Organizations and

FoundationsBlessings Fund CommitteeCommonwealth of PACopeland Family Foundation, Inc.International Heart of Variety Textile

DivisionJewish Community Federation of OhioLorimier Charitable Lead Annuity Trust

Individual/FamiliesTerri Danner Stan & Carole Davis Gordon & Shirley Kidd David & Theresa Langer

Guardians $1,000-4,999Corporations, Organizations and

FoundationsA & A Contract Services, Inc., The

Survis GroupAmeriquest Mortgage CompanyAntares Management SolutionsAtlantic Concrete Products, Inc.Bank of America, N.A.Bizzy Bee ExterminatorsC & C Ford SalesChapman Ford Sales Inc.Charlottesville Concession, LLCCoca-Cola Company- Doug Hopkins Community Bank of West GeorgiaCreel Properties, Inc.D.O. Summers CO.David Lichter & Associates, P.A.DePuy SpineE. B. Atmus Co., Inc.Enviromental Housing GroupFirst Presbyterian Day SchoolGeorgia Power CompanyGloria & Frank Pipp FoundationHorizon PressJ TCroker & Company, IncJersey National Cleaning Service

John Hancock Financial ServicesGiving Campaign

Kreiser Distributing Co/Del & Marge Kreiser

Lake Family FoundationLittelfuse IncMagnum Construction Co.McAllister Construction Co., Inc.Mercedes-Benz of BedfordMerck & Co., Inc.Microsoft CorporationMonterey Bay Fish GrottoMorgan's Foods, Inc.MotorcarsNational Distributing CompanyNew Vision Title Agency, LLCPalmer Marketing, Inc.Parbold Contractors, Inc.Peachtree Club Management Corp. Penni & Stephen Weinberg FundPFR Youth MinistriesPHA Finance, Inc.Preferred Real Estate GroupRetail Ventures, Inc.S&T BankSam's Club FoundationSamuel D. Cozen Memorial FundSutherland, Asbill, & BrennanSwearingen Realty Group, L.L.C.T.E.A.M.Telephone Operating SystemsTennessee Gas PipelineThe Billi Marcus FoundationThe Community FoundationThe Morris Family Foundation Inc.Tomato Face FoodsTower Financial Services, Inc.Turner Entertainment GroupUnion Bank of CaliforniaVirginia Friedhofer Charitable Trust

Individual/FamiliesDavid Ackerman Wendy M. Arnold Mr. Joseph Auth Molly Auth Dr. & Mrs. Charles Babbush Mr. Gary S. Bluestone Alex R. Bobick Karmen Booker Michael Brewster Dan & Julie Brunk Keith Butler Chuck Carroll Dr. Art Caylor, M.D. J. Donald Childress Sean & Donna Collins Elizabeth Cotrim

Ronald DeLuca Daniel C. Deufel Bruce Dice Burton Garrett David & Phyllis Gray Boerre Hansen Brian & Pamela JohnsonBarbara & Chris Jones Matthew & Kristy Kovalcik Stephanie Krug Virginia & Mark Ledbetter Julie & Floyd Light Andy Thomas McDonald Russell & Jane Meyer Ron & Donna Miklos Mr. & Mrs. Robert M. Mirvis Charles & Adrienne Mohan James Morrissey Dr. Sheldon & Elizabeth Oberfeld Katherine H. Olmsted Martin & Mary Packouz Shaun & Susan Probert Ed & Nancy Richardson Maury & Barbara Riff Aileen & Brian Roberts Ellyn & David Roberts Dr. Ronald & Helen Ross Sean E.L. Russell Jerry C. & Bernita L. Shuck Lynn W. Valentino Paul & Harriet Weinberg Larimore K. Wickett Thomas & Brenda Williams Kevin & Melissa Wilson Erwin Zaban

Sustaining $500-999Corporations, Organizations and

FoundationsGerald B. and Richard P. Adelstein,

DDS, Inc.Allenberry Resort Inn & PlayhouseAvalotis CorporationBug-Eye Contractors, Inc.Central Elementary SchoolClassic ChevroletClassic LexusCobbs, Allen, & HallCrestveiw High SchoolDevon Health Services, INC.Douglas Pump Service, Inc.Dumar/Huntson Paving, IncEllacott Shaker Volkswagen, IncEquititle, LLCF.O.E. Sunbury Aerie No. 3614, Inc.First National Bank of OlatheFranklin Regional School Student

Council

Ganley Westside Imports, Inc.Grapevine GroupHeeryHorizon Molecular Medicine, LLCIpakJack Norman CateringKolman JewelersLaRich DistributorsDr. Martin & Norma MarkowitzMassMutualMax Rieke & Brothers, Inc.McDonald's CorporationMcGrath Construction, Inc.Meetinghouse School & Westminster

ElementaryMerit Electric Company, IncMidwestern Financial Group, Inc.Mohan's RestaurantNational City BankNstar Electric & Gas CorpPerformance Site ManagementPNC Financial Services GroupPrice Waterhouse CoopersProtestant Episcopal Diocese of

MassachuettsQuivira, Inc.R SolutionsRapid Service CenterRegional Insurance Associates, Inc.Royalty America, Ltd.Samuel D. Plotkin & Associates, Inc.Shaker Auto Lease, Inc.Southern HomesState Farm Insurnace - Greg AdamsStellar Consulting, LLCJulius L. & Libbie B. Steinsapir Family

FoundationStrecker Eye Care Center The Active Network, Inc.The Charles O. Pyron Family

Foundation Inc.The Estate of Albert SteinerThe Jam FoundationThe Zanesville Esquires, Inc.Trans Union, LLCTwinsburg Fire Dept.UPS Foundation, Inc.Valley Ford TrucksW. F. Smith, Inc.Wachter Network Service, Inc.Willbanks & Associates, Inc.

Individual/FamiliesStephen & Rosalind AtkinsDebra BaakHeidi & Robert BaileyWilliam & Kathryn BakerStacy & Wayne Block

Donors - Thank YOU!Appreciating the People Along the Way

“We are often so caught up in our destination (acure and better treatments) that we forget toappreciate the journey – especially the goodness ofthe people we meet along the way.”

- Margaret Malone


Bernard GoodmanTiffany GrantWalter & Elizabeth HalterJohn & Wendye HendleyBarbara HennessySteve HooverMary Lou & Stephen HoytSam ImmermanMarie Inverso KaneTodd & Laura JacksonPatricia KirlinBonnie & Larry KleinRichard W. Kubach, Jr.Stephanie LarsonMatt LawerLouise LocarioJames & Sue LomeoMartin & Bonnie MallitNadine & Philip MancusoPhilip & Barbara McAnanyErika McCarthyJoseph & Kathleen McCarthyMary & Leo McNamaraTheresa McNamaraMarjorie MelamedY.S. & V.E. MontalbanoThomas Munger & Virginia MorrowDeborah A. Myers

Carrie & Bradley BoerickeDave BoncekEileen & Thomas BrennanMr. & Mrs. Randall BrownMaurice & Betty BurgenerEliot & Susan CharnasPatrick & Dawn ChaseRobert & Mary Jean ClohertyRichard & Sharon CohenDr. & Mrs. Bruce CohnBryan CroughanAnn & James DaltonDavid DannerBrian & Stacey DavisGeorge DelRossiWillard & Amanda DickersonRichard & Sabrina DiMicheleRobert & Elizabeth DobbeNessun DormaJuliann & James DowBarry FeinsteinBlake & Cynthia FineMichele Ann FisherRobert & Barbara FoxFrank B. Fuhrer IIIMs. Norma Daniel GibsonMary & Mike GillenJane & Gerald Goldstein

Bob & Linda NealSusan & Andy NelsonNeil & Marilyn NewmanAngie & Mike NewtonSara O'ConnellBryan & Erin OlsonArdy OuelletDaniel & Karen PatersonPaul & Amanda PattersonHarry & Martha PerrinRobert & Jill PlattGlen E. PosladekPaul & Paula QuinnGail R. RaderMary & John RatermanKay & Mel ResnickSeymour ResnickJudith & George A. RothbardTheodore RudolphLinda & William SchecterLee G. SeidmanIrving M. ShlesingerDavid ShockleyJames Sr. & Nancy SidoMarla S. SilbermanPeggy SlappeyRodney & Deborah Slump

Mrs. Lea SoupataPhilip SteeleMike & Dulce StengleinHarry L. StromgrenMrs. Florence SubinGeorge & Kathy SvilarWinston C. TaylorKerry TobinJay & Karen TompkinsSandra & Rick TrottierLois Ann & Bruce A. TylerDiane & Michael VincentWilliam & Kerri WaddellRobert WagnerPeter Jake WallaceJoe & Clara WallerHelen & John WardStephen J. WeinbergKelsey WrightMike & Piper WyattBrian YamaatoJames YoderTina Zadrozny

Donor Acknowledgement Continued - THANK YOU

Zachary Juhlmann is an excep-tionally sunny, optimistic 13 yearold boy, who smiles often andthinks positively despite a multi-tude of health issues and somehard knocks no one should have todeal with. His road became rockyat 5 weeks old, and eventuallymitochondrial cytopathy wasdetermined to be the cause of hischallenges. He has gradually lostthe ability to eat, then to be fed byJ-tube, so now he is wholly depen-dent on TPN. Additionally, herequires a continuous cardiac dripand two other infusions. Hisbiggest loss, though, has been hisyounger brother Sam, who suc-cumbed to the same diagnosis thispast year. Zachary was a wonder-ful model to Sammy, who was also

completely dependent on TPN formost of his 7 years and 9 months.Zachary taught Sam in word andaction that being on TPN was justthe way it was and that did notmean life should not be lived.They were "best brothers," shareda room, and did everything togeth-er. Zachary is fiercely independent,and determined when he startedTPN full time that "I am nevergoing to get better, and nevergoing to get off TPN, so I betterlearn how to give myself my medsand TPN; because I don't want youto come to college with me, and Iam definitely growing up andgoing to college." To know youwill never get better at the age of13 is quite a burden to carry.Zachary carries this burden with

grace, while doing his homework,going to robotics club, playingpiano, and playing with friends.When his class studies nutrition,Zachary shares how his therapieswork, helping his classmatesunderstand nutrition support.Zachary's mom Anne states, "Hishope, despite the incredible realityhe lives with, and his love of life,are inspirational and humbling tothose around him. He is the mostcourageous, resilient person Iknow." We are proud and honoredto award Zachary Juhlmann withthe Young Adult of the YearAward.

Editor’s Note: CongratulationsZachary and best wishes to youand your entire family!!!

2005 Holiday CardCampaign

Special thank you to EVERYONE who participated inthe 2005 Holiday Card Campaign. Nearly $64,000 was

generated from this annual appeal – Outstanding!!!

The following was pulled from the Oley Foundation web site, and since Zachary is one of our “mito” kids, wewould like to share his achievement! The Oley Foundation helps people whose daily survival depends on home intravenous or tube-fed nutrition.Oley Foundation Young Adult of the Year WinnerSponsored by Pediatric Services of AmericaZachary Juhlmann of Waukesha, WI


Join us in At lanta – Search the Mitochondrial Maze for Knowledge

and Celebrate our Accomplishments

We hope you will join us on Friday, June 16, 2006to celebrate the United Mitochondrial DiseaseFoundation’s 10th Anniversary.

This Special Evening will ...... Celebrate our Accomplishments in Research Help us Congratulate our 2006 Research Grant Recipients

... Celebrate our VolunteersCheer on our 2006 Heartstrings and LEAP Recipients and Enjoy a

Special Tribute to UMDF’s First ChairmanCharles A. Mohan, Jr.

... Celebrate with MagicComic-Magician Sam Simon “creates a high-energy show that will

make the audience roll with laughter and gaze in amazement.”Please note that we are selling extra tickets to the banquet as afundraiser to offset conference expenses. Call 412-793-8077 for

more information.

More Magic and Music!Sam will continue the magic in

the reception area and music willbe provided by a local DJ for

those who are not quite ready tocall it a night.

allin

of us

There’s alittle

bitof

magic

Mastering theMitochondrial Maze

Atlanta 22006 Scientific MeetingsJune 14-17, 2006Family MeetingsJune 16-17, 2006

If you have not received a brochure with program details,please email [email protected], or download one from the web.

Sheraton Atlanta HotelAtlanta, Georgia, USA

Register online at www.umdf.org

It is finally official, and TheUnited Mitochondrial DiseaseFoundation has a new identity(logo and tagline). Within the nextfew weeks, the above logo willalso incorporate the new tag line of“Hope. Energy. Life.”

On behalf of the UMDF Board,Staff, and membership, we wouldlike to thank the members of theMarketing Subcommittee as wellas the Planning and MarketingCommittee (see below). AllisonRogers has been a dynamo inorchestrating the logo developmentand continues to spend countlesshours with her committee on thedevelopment of a much neededMarketing Communications Plan.

As noted in the last newsletter,an exhaustive investigation wentinto the development of the logoand key issues for an effective newidentity included Timeless Style,Distinctive, Appealing, Strong &Impactful, Legible, EasilyIdentifiable and Versatile.

Over the next six months, youwill notice a slow transition to thenew logo and tagline. New sta-tionary and other print collateralare in the early stages of develop-ment.

We are all very excited aboutthe possibilities this new identitywill play in telling our story andopening doors to funding – givingeach and everyone of our affectedchildren and adults Hope. Energy.Life.

Planning & Marketing CommitteeChair: Richard W. Kubach, Jr.Allison Rogers, Chuck Mohan,Tova Sido, and Michael Friedberg.

Marketing Subcommittee:Chair: Allison Rogers (SC)Heidi Bailey (CT), Jason Conte(CA), Jeff Salt (OH), Karen & BillWilson (PA), Dave Stahler (OH),and Alison DeVriendt (CA)


Mito Adults CornerCalling All Mito Adults: The Mitochondrial News Needs YOU!

Please consider submitting an article for review or sending us your experiences with a specific topic of interest.If you are willing to help, please email Kara Strittmatter at [email protected] or call 412-793-8077, ext. 114. Welook forward to hearing from you!

I can't recall a time when Ididn't know him. It is just likethat with some people – wherethe connection runs so deep itfeels as though they havealways been a part of your life.

In the decade that I haveknown Chuck Mohan, I haveprobably only been in his phys-ical presence ten times. But, the

connection was made the first time I heard himspeak. Perhaps it was the sincerity in his voice thatgrabbed my attention, or maybe I was impressed byhis overwhelming generosity in the face of the tragicloss of his own daughter. Either way, for me, ChuckMohan's words were magical – they beckoned me totake action and forged an unspoken bond.

No, I have not had the privilege of spending vastamounts of time with this remarkable human being,but I think of him often. I think of him on those dayswhen I feel as though I have been abandoned by aworld that can't possibly begin to fathom the suffer-ing of someone afflicted with mitochondrial cytopa-thy. I seek solace in the fact that one man has not for-gotten me – that Chuck Mohan is out there fightingwith every word he speaks for all of us who wagewar daily with this pernicious disease. I think ofChuck Mohan every time there is a milestone eventin the life of my wonderful seventeen year olddaughter. I understand that no matter how compro-mised my life has been, I am fortunate to have sur-

vived to celebrate every one of those occasions. I amacutely aware that on the day that Gina Mohan losther valiant fight for life, her family lost their brag-ging rights of all that could have been. While there isno compensation for the loss of a daughter, I do carryGina in my heart ever single day. I draw inspirationfrom her short time on earth and the magnanimouscommitment her family made so that their daughter'sdeath would not be in vain.

Coincidentally, as Chuck Mohan prepares to retirefrom his position as Chairman of the Board of theUMDF, my daughter Dana is preparing to graduatefrom high school and enter Vassar College in the fall.It is a time for deep reflection. I celebrate my daugh-ter and Chuck Mohan for their extraordinary contri-butions to the world. It is inevitable that I will missmy daughter as she embarks on the next juncture ofher life, but I will also miss that man whose presenceI have been in less than a dozen times. I will remainforever grateful that a man with a heart so generousreached through his own pain and mine to inspire mewith hope for the future and courage to become partof a quest for the cure. On the many days when it isa struggle just to breathe, I hold Gina's memory closeand pay tribute to Chuck Mohan who won my heartwith the very first word I ever heard him speak.

With Deepest Gratitude,

Barbara Bruck

Mito Adults Corner - by Barbara Bruck

Tribute to Chuck Mohan

The Georgia GeneralAssembly commends UMDFthrough a special Resolution

and cites the 2006 Conference:http://www.legis.state.ga.us/

legis/2005_06/sum/hr1683.htm

Thank you Sheri Seldes forsharing this and helping make it

happen!

The Philadelphia 76ers honored Maripat Shelly ofHarleysville, PA, as a "76ers Hometown Hero" at the Sixers-Hawks game on Wednesday, March 22, 2006. The "76ersHometown Hero: In the Spirit of Alex Scott" program recog-nizes "an everyday hero in the community" and awards two tick-ets to a Sixers game.

Maripat, as well as her five children, suffers fromMitochondrial Disease, but that has not stopped her from volun-

teering as the Delaware Valley Chapter President or helping to orchestrate theChapter’s successful annual “Go for Mito!” Walk/Run (which is set forSeptember 9, 2006). Maripat doesn’t seek such recognition but, for many ofthose who know her, she deserves it. Special thank you to Dana and Alan Genettifor nominating Maripat – our heroes deserve recognition, and you helped makethat happen!!

In the News


From the Desk of Becky DiLettusoDirector of Member Services:We are launching a new program! Soon you will be seeing the names ofour Ambassadors listed in the Newsletter, and here's why…….

We receive requests for support, information and referral from various parts of the United States and other countriesin regard to mitochondrial disease, and many families want to connect with others near where they live. Often weare unable to create a Mito Group due to the limited numbers of members in a given region, the remoteness of thearea of the country, the lack of readily available public transportation and limited access to medical services. Inresponse to these requests for support, we have established a program called "UMDF Ambassador" for thosepersons who are willing to take the responsibility for supporting other individuals and families in their area, but due toone or more of the reasons listed above, creating and sustaining an ongoing Mito Group is currently unrealistic. TheAmbassador will work to increase awareness, educate local physicians and assist others who might contact them todo the same. If through this education and awareness process, there is enough interest and membership to move toMito Group status, this would be accomplished in conjunction with support by the Member Services Department. Thisnew program will enable the UMDF through the Ambassador to heighten the local awareness about mitochondrialdisease and expand our presence nationally. If you are interested in becoming an Ambassador, please contact us [email protected] or call us at 412-793-8077.

NEW Program!!!

Two New Faces at the UMDF OfficeTania Hanscom - Data Entry/Finance

Tania Hanscom is a 2002graduate of Slippery RockUniversity with a BS in SportsManagement. She hasexperience with special events,marketing, sales, and customerservice. Tania joined theUMDF staff in November2005 and has already become

invaluable in the finance department as well asproviding assistance to the other departments asneeded.

Owen McGrann - DevelopmentOwen McGrann is UMDF’s

Development Assistant. He hasa BA in English andPhilosophy and an MA inEnglish Language andLiterature. Before joiningUMDF, he worked as aninstructor at Binghamton

University, teaching courses on Professional Writing.Owen also started at UMDF in November and hasalready successfully tackled numerous projects.Currently, Owen is soliciting sponsors and exhibitorsfor the 2006 conference and orchestrating a special10th Anniversary appeal campaign.

Welcome Aboard, Tania and Owen!!!

Announcements and Merchandise

UMDF WindshirtsThe windshirt is green nylon and cost$30 (includes shipping).

UMDF Throw BlanketsThe blankets come in Black, Royal Blue,Khaki, Forest Greencolors and cost $20(shipping included).

Visit www.umdf.org for more infor-mation on how to order or call 412-793-8077.

Please note: The blankets will be available with the newlogo soon.

Energy Bands - stillAvailable in Youth andAdult Sizes

Visit www.umdf.org for more information on how toorder or call 412-793-8077.

Awareness Car MagnetsAwareness magnets are also available andcan be purchased online at www.umdf.org.The cost is $5 each or 10 for $25 (postageand handling included). The magnets areUMDF green with yellow trim and wording.


ARIZONAArizona Chapter

President: Suzanne PerrymanEmail: [email protected]

CALIFORNIASouthern California Chapter

President: T BAEmail: [email protected]

FLORIDAAmbassador (NEW) - MelbourneContact: Christine GoldenEmail: [email protected]

North Central Florida Mito GroupContact: Alicia KaminskiEmail: [email protected]

Southern Florida Mito GroupContact: Anne RecklingEmail: [email protected]

GEORGIAAtlanta Area Chapter

President: Chris SwinnEmail: [email protected]

IDAHOIdaho Mito GroupContact: Jennifer PfefferleEmail: [email protected]

INDIANAIndiana Chapter

President: Sue Ann BubeEmail: [email protected]

ILLINOISChicago Area Mito GroupContact: Gail Wehling Email: [email protected]

Central Illinois Mito GroupContact: Crystal SmithEmail: [email protected]

KENTUCKYAmbassador (NEW) - LouisvilleContact: Krystena RichardsEmail: [email protected]

MARYLANDDC Area Mito GroupContact: David HammEmail: [email protected]

MASSACHUSETTSNew England Chapter

President: Bridget WillisEmail: [email protected]

MICHIGANWestern Michigan Mito GroupContact: Suzanne MarousEmail: [email protected]

MISSOURI/KANSASKansas City Chapter

President: Pam JohnsonEmail: [email protected]

St. Louis Area Mito GroupContact: Marsha HoheEmail: [email protected]

NEW YORKNew York Metro Chapter

President: Mary PisaniEmail: [email protected]

Ambassador (NEW) - New PaltzContact: Beth and James DeArceEmail: [email protected]

OHIOOhio Chapter, Cleveland, OH

President: Bill HodgesEmail: [email protected]

Columbus Mito GroupContact: Shawna SteeleEmail: [email protected]

Cincinnati Mito GroupContact: Jeff & Cindy SaltEmail: [email protected]

OREGONPacific Northwest Mito GroupContact: Gretta ColeEmail: [email protected]

PENNSYLVANIADelaware Valley Chapter

President: Maripat ShellyEmail: [email protected]

Pittsburgh Mito GroupContact: Karen WilsonEmail: [email protected]

UMDF Chapters, Mito Groups & Ambassadors

Ambassador (NEW) -Central PAContact: Kim OlenderskiEmail: [email protected]

SOUTH CAROLINAAmbassador (NEW) - ChapinContact: Karis MottEmail: [email protected]

Carolina Foothills Mito GroupContact: Allison RogersEmail: [email protected]

TEXASDallas Mito GroupContact: Tova SidoEmail: [email protected]

Houston Mito GroupContact: Deb SchindlerEmail: [email protected]

VIRGINIARichmond/NorfolkContact: Seeking new leadersEmail: [email protected]

OUTSIDE OF THE UNITED STATES

AUSTRALIAContact: Rob RyanEmail: [email protected]

New groups are getting started inIdaho, Houston (TX),

Raleigh/Durham (NC), Louisville(KY), Northern California, NewRiver Valley (VA), and Central

Pennsylvania. Call us if you areinterested in becoming anambassador or starting a

Mitogroup in your area. [email protected].

Attention Mito Groups and Chapters:Sell Vacation Toward a Cure Tickets and WIN!!!

(See Page 15)

Grand PrizeGroup or Chapter selling the most raffle tickets

(at least $5,000 in ticket sales)will WIN $1,000 in scholarship money for Chapter/Mito Groupmembers to attend the 2007 UMDF Symposium in San Diego

United Mitochondrial Disease Foundation LEAP Award Living, Encouraging, Achieving & Persisting

Purpose: To recognize an individual living positively with mitochondrial disease, highlighting the person'saccomplishments and volunteer service.

Eligibility: Age 14 years or older

Criteria: Individual with confirmed or suspected mitochondrial disease who overcomes daily challenges to achievegoals in career, family, and volunteer service. The individual demonstrates a positive attitude, hope for a brighterfuture, and an enthusiasm that inspires others.

Instructions: Any UMDF member can nominate an individual for this award. Fill out the form below and attach therequested information. UMDF will announce the LEAP Award winner at the annual symposium and will present thewinner with a plaque. The LEAP Award winner will be featured on the UMDF web site and recognized in the UMDFMitochondrial News newsletter.

In 100 words or less, please explain how this individual overcomes daily challenges to achieve goals in career, family,and volunteer service. Please provide examples of how the individual demonstrates a positive attitude, hope for abrighter future, and an enthusiasm that inspires others. You may also attach copies of articles about the nomineeand lists of projects, activities, or clubs the nominees is involved with.

Please type your essay and attach it to the nomination form. Mail the nomination by April 28, 2006 to:LEAP AwardUMDF8085 Saltsburg Road, Suite 201Pittsburgh, PA 15239

Or fax to 412-793-6477 or email the nomination by April 28, 2006 to [email protected].

Person NominatingName:

Address:

Phone:

Email:

Nominee for the AwardName:

Address:

Phone:

Diagnosis (if known):

Age (must be at least 14 years old):

Help the United Mitochondrial Disease Foundation ...

22 Mitochondrial News Fall 2005


Person NominatingName:

Address:

Phone:

Email:

Nominee for the AwardName:

Address:

Phone:

Diagnosis (if known):

Age (must be less than 18 years old at time of donation or event):

... Identify Everyday Heroes

United Mitochondrial Disease Foundation Heartstrings AwardRecognizing a youth commitment that tugs on the heartstrings

Purpose: To recognize a child or teen who has donated or raised funds for UMDF, enabling UMDF to continue itsmission.

Eligibility: The individual recognized must be under 18 years of age at the time of the donation or fundraisingactivity.

Criteria: The winner is chosen based on related criteria of age, time invested, talents demonstrated, effectiveness,and generosity. For nominees who implement fund raising projects, the judges will consider the uniqueness andcreativity of the project, communication, the time invested, and the amount raised in comparison to the age of theindividual. For nominees who donate funds, the judges will consider the generous spirit shown, communication, andamount donated in relation to the age of the individual.

Instructions: Any UMDF member can nominate an individual for this award. Fill out the form below and attach therequested information. UMDF will announce the winner at the annual symposium and will present the winner with aplaque. The Heartstrings Award winner will be featured on the UMDF web site and recognized in the UMDFMitochondrial News newsletter.

In 100 words or less, please explain how this individual has “tugged at your heartstrings” through fundraising for or adonation to UMDF. Identify important features of the nominee’s activity, such as the time invested, creativity,communication skills, determination, effectiveness, and generosity. You may also attach supporting information onthe fundraising project (published articles, pictures, comments from others involved with or participating in theproject) or the communications of the nominee (letter explaining intended use of the gifted funds, thank you letters,letter sent with the donation, and so forth).

Please type your essay and attach it to the nomination form. Mail the nomination by April 28, 2006 to:Heartstrings AwardUMDF8085 Saltsburg Road, Suite 201Pittsburgh, PA 15239Or fax to 412-793-6477 or email the nomination by April 28, 2006 to [email protected].

NONPROFIT ORG.U.S. POSTAGE

PAIDPittsburgh, PA

Permit No. 4899

Volume 11 • Issue 1 • Winter 2006

In This Issue:Depression, Dysmotility and Migraine . . . 1Tribute to Chuck Mohan. . . . . . . . . . . . . . . 1Chairman and CEO Reports . . . . . . . . . 2-3Ask the Mito Doc. . . . . . . . . . . . . . . . . . . . 4Chapter Activities . . . . . . . . . . . . . . . . . . 5-7Board Spotlight. . . . . . . . . . . . . . . . . . . . . . 9Event Calendar . . . . . . . . . . . . . . . . . . . . 10Fundraisers . . . . . . . . . . . . . . . . . . . . . 12-13Donors . . . . . . . . . . . . . . . . . . . . . . . . . . . 16Symposium . . . . . . . . . . . . . . . . . . . . . . . 18Adults Corner . . . . . . . . . . . . . . . . . . . . . . 19Announcements & Chapter/Group . . . 20-21

Next issue will be Spring/Summer combined – Deadline is 6/1/06

UMDF MISSIONTo promote research and education for the diagnosis, treatment

and cure of mitochondrial disorders and to provide support toaffected individuals and families.

8085 Saltsburg Road, Suite 201Pittsburgh, PA 15239Phone 412-793-8077

Fax [email protected] • www.umdf.org

© The United Mitochondrial Disease Foundation.All rights reserved.

UMDF’s intent is to keep you informed - we askthat you always discuss any diagnoses,

treatments, or medications with your personalphysician. UMDF assumes no liability for any

information in the Mitochondrial News.

The UMDF Office StaffWe’re Here to Help You! 412-793-8077

CEO/Executive DirectorJ. Thomas Viall, [email protected], ext. 111

Chief Financial OfficerMark Campbell, [email protected], ext. 110

Director of Member ServicesBecky DiLettuso, [email protected], ext. 101

Director of CommunicationsKara Strittmatter, [email protected], ext. 114

Manager of Special EventsJodie Tabano, [email protected], ext. 106

Fundraising/Special EventsGillian McTiernan, [email protected], ext. 102

DevelopmentOwen McGrann, [email protected], ext. 112

Member ServicesBethany Bassett, [email protected], ext. 104Melinda O’Toole, [email protected], ext. 103

Data Processing Tania Hanscom, [email protected], ext. 107Donna Nameth, [email protected], ext. 109

UMDF Research Grants ProgramJean Bassett, [email protected], ext. 105

Administration Barbara Podowski, [email protected], ext. 100

mnews itochondrial€¦ · celebrate. mito ambassadors are volunteering and mito groups are being...

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