Iron FilingsThe Newsletter of the Canadian Hemochromatosis Society Spring, 2004

Member in the Spotlight: Ruth Doll

The DisorderHemochromatosis is the most common

genetic disorder afflicting Canadians. It is

a crippling, potentially fatal condition

caused by iron overload in the joints and

organs. The complications caused by the

disorder are preventable.

Our PurposeThe society is dedicated to the dissemina-

tion of information about the disorder,

and its early diagnosis and treatment.

Inside

From the President _______ 2

Research Digest __________ 3

Coming Events ___________ 3

Mail Bag _________________ 4

Memorial Remembrance __ 6

New Members____________ 6

Maggie’s Message ________ 7

AGM Notice ______________ 8

Awareness Week _________ 8

Iwas born in rural Eastern On-tario, the only girl and youngestof three. Our ancestors wereUnited Empire Loyalists who mi-grated to Ontario in the 1800s. Ifyou weren’t Irish you pretended tobe, especially on St. Patrick’s Day.Little did we know those ‘green’genes held a secret.

After Grade 13, I became aregistered nurse, did a two year stintas a stewardess, then took a publichealth nursing course. Denis and Imarried in 1963 and we had threelovely daughters. I worked part timein North Vancouver until 1997 butwas often exhausted after a day’swork. This was not unusual as I’dalways been easily fatigued,requiring more rest than most. Inmy forties this was aggravated byosteoarthritis in my hip. My father hadthis, also my brother Ben, in his forties.Ben has had a grand total of five hipsurgeries!

I declined surgery for 15 years, finallyhaving a total hip replacement in 1995. Iwas in an analogous programme,extracting my blood to be returned duringsurgery, if necessary. Iron was orderedroutinely with this and I’d taken a coupleof pills when the hematologist left amessage, “Hold the iron!” I was told I wasborderline for hemochromatosis, as theferritin would likely be higher if affected.Probably, he thought, I was just a veryhealthy woman. He suggested my familyshould be tested but no one took itseriously. A genetic test wasn’t yetavailable.

In 2001 the other hip required sur-gery. I met another hematologist throughan experimental drug test in which I par-ticipated. I mentioned my high ferritin.She asked my ethnic origin and a coupleof further questions, checked my hands,particularly knuckles, then she requestedthat I become her patient! One month lat-er the diagnosis was hereditary hemochro-matosis and the phlebotomies began.Oddly enough, the night before that doc-tor’s visit, Ben phoned to say his ferritinwas 1400 plus. An astute family physicianhad been seeking the reason for the highincidence of cardiovascular disease in myfather’s family. Unfortunately, Dad and hissiblings are deceased, so we can only sur-mise he had the disease. Our families’ chil-dren have been tested and are carriers.

Active, Busy and Healthy

Ruth Doll, at home

Continued page 6

2 • Iron Filings • Spring, 2004

From the President

Changes Ahead for CHS

Volunteer Contacts

We need contacts in outlying areas. We

have no contacts in PE, NT, or NU, so call

us if you want to help.

MEETINGSOttawa Support Group

2nd Thursday of the month, Riverside

Hospital Boardroom, 1967 Riverside Dr.,

Ottawa. Parking is $4.50. Call Marjorie

613-739-9277 or Elaine, 613-521-5897

Toronto Support Group (New)

Next meeting will be held at K. Easun’s

home in downtown Toronto on May 6 at

7:00 pm. Call 416-598-5248 for info.

Richmond Support Group

For information, call the Richmond office

at 604-279-7135.

Newsletter produced by Chris Petty

Iron Filings

Canadian Hemochromatosis Society#272 - 7000 Minoru Boulevard

Richmond, BC Canada V6Y 3Z5604-279-7135

fax 604-279-7138email office@cdnhemochromatosis.ca

Toll Free 1-877-BAD-IRON

Member of the International Association ofHemochromatosis Societies

Charitable Donation #11921 9160 RR 0001

Board of Directors, 2003/4

President EmeritusMarie Warder

National PresidentCharm Cottingham

National Vice PresidentElizabeth Minish

National Treasurer (Interim)Ross Gilley

National SecretaryRick Plumridge

National DirectorsKay Belanger

Maggie Campbell

Ruth Doll

Brian Drab

Dr. Siegfried Erb

Debra Finlay

Ross Gilley

Marjorie Lounder

Nancy Cottingham Powell

Dr. William Saywell

Marlene Stasyk

Bruce (Skip) Young

Great changes are taking place inthe Society which should help usmove forward with more effi-ciency and speed. The Strategic PlanningCommittee has completed a new missionstatement which is much more compre-hensive than our last one, listing our goalsin such a way that there can be measur-able results.

Skip Young, one of our new Boardmembers along with Debra Finlay, ourBoard lawyer, are working on a new con-stitution and set of by-laws for the Soci-ety. They will be completed in time for ourAGM in April. A copy of any of thesedocuments are available by request, oryou can view them on our website whenthey are posted after the AGM.

The Strategic Planning Committeealso identified the need to hire an execu-tive director at the top of that list. I amhappy to report that our new ExecutiveDirector, Agnes Papke started to work forthe Society in January and a new directionis already evident.

In December, I attended a meeting inOttawa of the National Voluntary Healthand Health Professional organizations. Itwas sponsored by Health Canada to re-port on how collaboration has been estab-lished between voluntary organizationsand professional ones and how muchmore could be done. It is not always obvi-ous how small organizations like ours canparticipate in these types of partnershipsor what we might have to offer but thereis always something to be gained fromparticipating in these meetings. For exam-ple, I did meet Dr. John Maxted, Directorof Health Policy and Communicationswith the College of Family Physicians ofCanada. I talked briefly to him about thelack of knowledge about hemochromato-sis among many physicians and if he coulddo something about it. He asked me toput my request in writing. He said that hewould forward articles to their profes-sional journal, Canadian Family Physi-

cian, but warned me that it is subject toeditorial discretion. He suggested that oneof our medical advisers should submit anarticle on the management of hemochro-matosis to the journal. He also said thathe would provide a link from their websiteto the American Family Physician whohave an article on it titled “Recognitionand Management of Hereditary Hemo-chromatosis.”

We are looking for a new leader forthe support group in the Richmond-Van-couver area as its leader had to resign dueto health reasons. On a more positivenote, the group in Ottawa continues tomeet regularly and a new group in To-ronto is hoping to get started in thespring. Our hope is to have supportgroups all across Canada eventually.

Another submission for financial as-sistance has been made to the BC GamingFund but we won’t know the results ofour application until April. In the mean-time we remain aware that our very exist-ence relies on the sale of our membershipsand on the generosity of our donors andwe wish to thank you for your continuedsupport. We look forward to seeing asmany of you as possible at the AGM onSaturday, April 24th.

— Charm Cottingham, President

Spring, 2004 • Iron Filings • 3

Digest of Current

Hemochromatosis

Research

Hepcidin Shows PromiseThe therapeutic outlook for hepcidinin the preventive treatment ofhemochromatosis has received a boost inthe past few years.

In April 2001, a team of researchersfrom the Institute Cochin in France setforth the hypothesis that hepcidin, apeptidic molecule (a molecule composedof a series of amino acids) synthesized bythe liver, was the main hormone involvedin the regulation of iron homeostasis inthe body.

This hypothesis has been largelyconfirmed in subsequent studies, not onlyby this team, but by other researchersthroughout the world. It was especiallydemonstrated that hepcidin was involvedin the mechanism of major illnessesrelated to iron homeostasis, inflammatoryanemia and iron overload.

Until recently researchers did notunderstand the mechanism leading to thedigestive hyperabsorption of iron. Thesestudies showed that hereditaryhemochromatosis seems to be due to aninsufficient secretion of hepcidin. Itfollows that treatment of patients withhepcidin, its analogues or products thatincrease iron synthesis, should be the basisof a logical preventive treatment of thisdisease in the future.Excerpts from a press release from April

2003 in conjunction with the publishing

of these studies in Nature Genetics

Gene Found for Juvenile OnsetHemochromatosisXenon Genetics Inc. and a team of in-ternational researchers report the discov-ery of a novel gene for juvenile hemochro-matosis. The gene is referred to as hfe2and Xenon has named the protein pro-duced by this gene, hemojuvelin.

Juvenile hemochromatosis is an earlyonset severe form of iron overload withvarying combinations of severe lethargy,arthritis, diabetes, cardiac disease and in-fertility. Affected patients, primarily in

their teens and 20’s and occasionallyadults in their late 30’s, fail to regulateiron uptake in the intestine resulting inabsorption of excess iron that is toxic tothe body. Researchers found that loss offunction of the hfe2 gene results in dra-matic intestinal iron uptake leading towhole body iron overload at a relativelyyoung age.

The researchers further assessed theimpact of hemojuvelin mutations on hep-cidin (a small liver-produced peptide hor-mone central to iron metabolism). Hemo-juvelin was found to be a key regulator inthe iron metabolism pathway and plays acritical role in the regulation of iron up-take in the intestine.

Hemojuvelin now becomes a pharma-cological target for the treatment of com-mon iron disorders. This important dis-covery could also have a major impact onthe diagnosis and treatment of iron over-load disease.From a study published in Nature Genet-

ics, Volume 35, January 2004

Link Between HHC andAlzheimersWhen Sharon Moalem was a teenager,he suspected his grandfather’s Alzheimer’swas linked to a buildup of iron in hisbrain. Years later, he proved it.

“I looked all over the world for some-one who would be receptive to the idea,”he says.

That someone was Professor MairePercy, a University of Toronto scientistwho was already looking at approachesthat might slow the progression of Alzhe-imer’s or prevent the disease. She had afreezer full of blood drawn from peoplewith an inherited form of Alzheimer’s —the material that might help him find theanswer he was looking for.

In 1999, Moalem and Percy began toscreen the samples for the gene that causeshemochromatosis, and they quickly no-ticed a pattern. He had been right. Therewas a link.

Their conclusion wasn’t as simple assaying people with hemochromatosis havea much higher risk of getting Alzheimer’s.They found that the genes for hemochro-matosis increase the risk of Alzheimer’s in

males if they are paired with another genecalled APOE-4, a known risk factor for aneurological disorder that may cause highlevels of cholesterol in the brain. Thetheory is that iron reacts with oxygen,producing toxic free radicals that canwreak havoc in the brain and other partsof the body. High cholesterol levels couldexacerbate the damage, because the freeradicals would feed on the fat.

There is other evidence of the link.Researchers have found iron in the plaquestaken from the brains of patients withAlzheimer’s. In 1991, a U of T study foundthat a drug that absorbed iron andaluminum in the brain slowed down thedisease’s progress. This month, a studysuggested that a drug, clioquinol, whichremoves extra metals in mice with a dis-ease similar to Alzheimer’s, improves thecondition of humans with the disease.

There is probably a central mecha-nism involved in Alzheimer’s. But there aredifferent ways to trigger it, much like withcancer. Whether you get the disease de-pends on the combination of your genesand environment.

One of those genes — and there mayturn out be dozens — appears to be thegene for hemochromatosis. Excerptedfrom the Globe and Mail, January 21,

2004

Dr. Art HisterOn April 24, Dr. Art Hister will inter-view Dr. Chris Whittington, author ofIronic Health on his syndicated radioprogram, House Calls. Visitwww.DrArtHister.com for a broadcasttime in your area. In the greater Vancou-ver area, the broadcast is at 10 am onradio station CKNW.

Dr. Whittington’s book is availablethrough the CHS office and website.

IDI Patient ConferenceThe Iron Disorders Institute will hold itsannual patients’ conference, IRONUSA,in Washington, DC, on May 12, 2004.For more information on the conference,and to see IDI’s latest newsletter, id-Intouch, visit www.irondisorders.org/

Coming Events

4 • Iron Filings • Spring, 2004

Mail Bag

Our Readers Speak Out We appreciate and welcome yourletters. In order to fit as many in ournewsletter as possible, we must edit forspace. Our apologies if our editors tookout your best lines.

What is it?The excess storage of iron in the body.

What is the cause?Primarily hereditary

Most common symptomsChronic fatigue, joint pain, irregularheart beat, mood swings and confusion,bronzing of the skin and abdominalpain.

Most common complicationsLiver and heart disease, diabetes, arthri-

tis and hormonal irregularities.

Tests required for diagnosisSerum ferritin, transferrin saturation per-centage and genetic testing.

TreatmentPhlebotomy treatments (bloodletting)which are ongoing for life.

Reference readingThe Bronze Killer; The Iron Elephant; IronicHealth; Iron Disorders Institute Guide toHemochromatosis.

Hemochromatosis

New Therapy Provides ImprovementI am enclosing a letter I have written to a

doctor in Alberta, after receiving very

different treatment for Hemochromatosis

since moving to British Columbia. I think

the letter is self-explanatory, and I have

omitted the name of the doctor.

As you know, I was under your care forhemochromatosis for approximately tenyears, having been referred to you by Dr.Braun, our family physician. While underyour care, I was impressed with what Ithought was your expertise, your carefulexamination of my liver on each visit, andthe fact that you, the doctor, inserted theneedle each time for the phlebotomy.

When I was under your care, I repeat-edly told you of my fatigue, my cravingsfor starch and sweets, my weight gain, myrestless leg syndrome, my heart palpita-tions and feeling cold much of the time.Although I continued with my work con-ducting residential therapy groups forwomen, it exhausted me, sometimes somuch that I literally could not sleep. Youthought that perhaps I had Seasonal Affec-tive Disorder and I subsequently bought a10,000 lux light box for light therapy.

On several occasions at the SpecialtyClinic I nearly fainted following my phle-botomy. At the time, I thought all thesesymptoms were caused by my treatmentfor hemochromatosis and were the “price

of my staying alive.” You will rememberthat one of my brothers died of hemochro-matosis shortly after I was diagnosed. Idid not question your treatment and, onthat basis, believed that another brotherwas not being treated properly; I was com-paring how often I had to be phlebot-omized with the treatment he was receiv-ing in Washington State.

In November of 2002, my husbandand I moved to Westbank, BC. Both mynew GP and the hematologist that he re-ferred me to were very surprised by whatthey considered my extremely low ferritinlevel. When tested here, my ferritin levelwas 15 ug/L. I believe your practice was tokeep me under 18 to 20 ug/L. One time iteven went to 7 ug/L. The hematologisthere said that I had been “iron starved”and that might have been the cause ofmany of the symptoms I have describedabove. The lab reports here say that 15ug/L is equivalent to Iron Deficient Eryth-ropoiesis; levels between 15 to 20 are la-belled as Iron Store Depletion, and levelsfrom 20 to 40 are Borderline Depletion.The practice at the Kelowna General Hos-pital is that no phlebotomy is given untilthe ferritin level reaches 75 ug/L.

This radical difference in treatmentmodalities was a shock to me. It is veryconfusing for a lay person to second guess

their specialist, although so very muchdepends on their treatment decisions. Idecided not to call you at that time, but togive the “new” modality a year’s trial,hoping that no damage would be doneduring that time.

It took a year exactly for my ferritinto reach the 75 ug/L level required here fora phlebotomy. During that year, I havehad increasing energy. I have re- decoratedmy house, worked physically outside, hadnon-stop visitors in the summer, andjoined an exercise program. I do not havethe cravings for starch or sweets; I don’thave the heart palpitations or the restlessleg syndrome. I have lost 25 pounds. Thereally exciting difference is that I havebeen able to conduct my therapy groupswithout any exhaustion.

I have debated a long time beforewriting this letter. However, the changes inmy physical condition and my energy lev-els have been so dramatic that I felt that Ishould register it with you, hoping thatmy experience might be worthy of a sec-ond look. Maybe my “staying alive” didnot have to take such a toll on me.G. E.-L.

Westbank, BC

Ed. note: The optimal minimum level for

ferritin varies with each person. Remem-

ber, you have the right to question your

doctor about your course of treatment.

Ankle Pain May Be Linked to HHCToday I am experiencing a new foundfreedom. I have just had my final cast re-moved from my left foot. Since June of2003 I have been in some sort of cast,having had surgery on both feet. I wasdiagnosed ten years ago by chance withhemochromatosis. Weekly phlebotomiesbecame routine for a year. It was discov-ered by a dreadful liver biopsy. The diag-nostic breakthrough of genetic testing un-fortunately wasn’t available then.

Not much was known about hemo-chromatosis then. My GP didn’t reallyknow what kind of specialist to refer meto: a gastroenterologist, internist or hema-tologist. Today under the care of a hema-tologist I have been able to maintain myferritin at a below normal level without aphlebotomy for over three years. What I

Spring, 2004 • Iron Filings • 5

We know you enjoy the Letters section.

You can also share your stories and

questions via our website. Many people

are finding this “cyber support group”

a big help. Check out the forum at:

www.cdnhemochromatosis.ca

and click on the News Board.

really want to share is my experience withmy debilitating ankle pain and my inabili-ty to do one of my greatest pleasures —walk my dog.

For the past four years I have gone tomany doctors about sore ankles. Most feltthat my symptoms had nothing to do withHHC since my ferritin was normal. I wentto appointments armed with HHC litera-ture, and most times I felt like the expert.

It wasn’t until one of the rheumatolo-gists I was seeing took a interest in an arti-cle I found on a patient with arthritic an-kles who had HHC. He noticed that a col-league from Toronto Western Hospitalwas mentioned in the bibliography. Heimmediately arranged for me to see himeven though I was a Quebec resident. Thisdoctor spent three hours with me, review-ing my history, examining my joints, andviewing my x-rays. He thought my x-rayswere inconclusive and I was able to have aCAT scan. He explained that my subtalarjoints were arthritic, not the ankle joint.The subtalar joint is a small joint underthe talar joint responsible for the rockingaction of the foot. It stabilizes your weighton your feet when walking on uneven ter-rain such as sand, snow or gravel. Whatthe CAT scan revealed made all my painjustified. I had little or no cartilage left onboth of my subtalar joints.

The treatment for severe arthritic sub-talor joints is a surgical fusion. The jointis scraped of the remaining cartilage thenstabilized with adhesive and a screw so

that it basically become an extension ofthe bone. I worried about my mobility andpain following surgery, but they told me Iwould be pain free and able to walk un-aided, but it would take three months tofuse in a cast.

The surgery went smoothly withoutmuch discomfort. The non weight-bearingcast for six weeks wasn’t the greatest whenyou live in a two storey house. I becamevery creative with my walker. My threechildren and husband were very support-ive. They all took their turn helping meshop in my wheel chair.

All of that is finally behind me. I willstart physiotherapy on my left ankle to-morrow. I can already walk, hop andjump like I was once able, pain free. I feelbrand new! Today when I was having mycast removed my orthopedic surgeon andstudent resident both commented that theyare seeing more patients with arthritic sub-talar joints. Many of them have HHC. Ithas been noted in most medical literaturethat the aching of the knuckles and thefirst joint of the second and third finger isa pattern that may suggest HHC. My sur-geon is planning on studying further thecorrelation of arthritis of the subtalar jointand HHC. It may be a clinical feature.

Even though HHC is the most com-mon hereditary disease, very little isknown by the medical community. I feelthat as a patient with HHC it is my re-sponsibility to inform the medical profes-sion with all of the information I have col-lected. I feel that all the patients withHHC should be pioneers for our futuregenerations. Tomorrow I am going to havethe joy of walking my dog again.J.B.-N.

Beaconsfield, QC

New Executive Director

Agnes Papke has joined CHS asExeuctive Director. Ms Papke has nearly20 years experience working with not-for-profit organizations, and is an accom-plished administrator. She served as Ex-ecutive Director of the UBC AlumniAssociation for nine years, and was Asso-ciate ED for five years before that.

She has a bachelor’s degree from UBCin Agricultural Sciences, and has served onthe national board of the Canadian Coun-cil for the Advancement of Education. Sheis a recent grandmother courtesy of herson and his wife, and is busy preparingfor the wedding of her daughter. She is anavid knitter and enjoys woodworking. Shehas a full woodworking shop in her homein Ladner.

We welcome Ms Papke to the Society,and look forward to working with her inthe future.

Omega Oils Provide ReliefI was having left knee pain, but aftertaking a blend of Omega 3-6-9 oil for amonth the pain suddenly vanished and hasnot returned! When I saw my doctorrecently, he said there is no problem withme taking this. I believe it is available atany health food store. I expect I’ll betaking it for the rest of my days!V.B.

Edmonton, AB

Please send your letters to:

Canadian Hemochromatosis SocietyRichmond Caring Place#272 - 7000 Minoru BoulevardRichmond, BC Canada V6Y 3Z5or email:office@cdnhemochromatosis.ca

Enjoy your newsletter!When you have finished with it,please pass it on. Our newsletter isalso available online at our website.If you would rather read it electroni-cally, or if you don’t want futurenewsletters, let us know and we’ll

take you off the list.

Speak Up!When leaving a message on our toll-free line, 1-877-BAD-IRON, leaveyour full name and address (spellthem out) and your 10-digit number.And please speak clearly.

6 • Iron Filings • Spring, 2004

New Contacts

Maggie Barnett, Comox, BC

250-339-2234

Pyrna Koberstein, Lacombe, AB

403-782-6010, ekoberstein@shaw.ca

John Higgins, Whitehorse, Yukon

867-667-2908

Jim and Helen Owen, Terrace, BC

250-638-7207 hjowen@monarch.net

Jane Nimigon, Beaconsfield, QC

514-693-0553

Christine O’Grady, Calgary, AB

403-257-2984 cogrady6@shaw.ca

Linda Perkins, Brampton, ON

905-790-6523 linda.perkins@bell.ca

Dorothy Minish, Swan River MB

204-734-3596 dottdot@mts.net

Almost three years later Ben and Iare on two-month phlebotomies. Thejury is still out on arthritis and HHC butI’d like to be on that jury! Ben may havebeen saved from further ills due to theheavy blood losses incurred during hissurgeries. I’m not as tired but stillrequire lots of rest. I’m active and verybusy. I’m retired, you see!

I now have the privilege of servingas a board member of the CanadianHemochromatosis Society. My dutiesinclude corresponding with ourCanadian contact people, thoseconscientious folk who are willing tohelp ‘spread the word’ about HHC intheir communities. We send educationalliterature, brochures, posters etc. fromthe Richmond office to all those whohave expressed interest. Anyoneavailable to volunteer, kindly contact theSociety at www.cdnhemochromatosis.ca,604-279 7138, or toll free 1-877 BADIRON.

In case I’ve portrayed us as a ‘sicklyfamily,’ we’ll attend Winterlude inOttawa in February as well as celebrateour mother’s 102nd birthday. She too,will enjoy it!

Ruth Doll:Member in the Spotlight

(continued from page 1)

Spring, 2004 • Iron Filings • 7

CHS Development

Maggie’s Messageby Maggie Campbell

Donate YourHBC Reward Points

Zellers, The Bay, and Home Outfit-ters now issue HBC Rewards points.Help us by donating your points tothe Society. Use our card #850 639047. Be sure to tell the rewards cen-tre that you want to keep your owncard active when donating points, orthey will cancel it.

Good DonationsYou can donate online through ourwebsite. Visit www.canadahelps.org.Search “hemo,” then click “Donatenow.” This is a secure site. You canuse your credit card with confidence.

Matching GiftsDoes your employer have a matchinggift program? If so, please indicatethe company name on your donation.If you aren’t certain, just send usyour employer’s name and we canfollow up. Many firms will matchsome portion of their employee’scharitable donations.

When sending money . . .. . . such as a cheque or Visa number,be sure to let us know what it is for.Money will be automatically enteredas a donation unless you specificallytell us it is for a membership or inmemory of a loved one.

It’s that time of year again: Tax season.Like all of us, I always want to knowhow to maximize my tax deductions.One of the best ways is to make a charita-ble donation. This is also the time of yearmy accountant reminds me to update mywill and talks to me about possible taxsavings therein. It wasn’t until I took aclass in planned giving that I understoodwhat my accountant meant.

We see the term “planned giving” allover the place now: every piece of mail Isee from a charity has a box to tick formore information about planned giving.But what does it mean? Planned givingmeans that you, along with your estateplanner, accountant or lawyer, establish acharitable gift in the future to maximizeyour goals and tax benefits.

There are many forms of plannedgifts, however the most common type ofplanned gift is a bequest in a will. Yourestate planner can assist you with makinga decision best suited to your needs. It isimportant to remember to make bequests,

as everything you own is considered tohave been sold at the time of death. Thismeans that your final tax bill could have alot of capital gains taxes applied to it soyour family will not receive as much asyou wish. If you would like more informa-tion about planned giving, contact yourestate planner.

We will publish our donor list in theFall newsletter in its own section so wecan do a better job of it. Special thanks tothe Richmond Sunrise Rotary Club fortheir generous gift, which covered most ofthe costs of our last newsletter.

I would like to take this opportunityto welcome our new Executive Director,Agnes Papke. Agnes is very committed tomaking the CHS more responsive to you,our donors. This means that besides thebiannual newsletter, you may be receivinga few more communications from us.

If you can distribute HHC material inyour community during Awareness Weekor if you would like more information,please contact the CHS office.

Board Gathers for Christmas DinnerMembers of the board (and guests) met for dinner at the Vancouver Lawn Tennis Club tomeet new Executive Director, Agnes Papke. Guests, clockwise from far left: Chris Petty,Skip and Gillian Young, Nancy Sather, Michael English, Ruth and Dennis Doll, ChesterBarber and Charm Cottingham, Agnes Papke, Maggie Campbell, Elizabeth Minish.

Gifts in KindOur Treasurer, Rick Plumridge, hasdonated a computer to our office. We willuse it to service our new database soft-ware, ACCESS. It will greatly improve ourability to use our database effectively.

If you have office equipment and/orsupplies, in working order, that you candonate, please contact our office. Thesedonations further enable our outreach ef-forts by allowing scarce resources to bedeployed in support of our mission.

Hui Zhu has finished transferring ourdatabase to ACCESS. We would like tothank her for her patience and persever-ance in working with the staff to achievethis challenging goal.

8 • Iron Filings • Spring, 2004

Support CHS and Raise Awareness of Hemochromatosis

� Payment enclosed � Please charge my VISA

Card # __________________________________ Expiry Date __________

Cardholder signature: ____________________________________________

� � � � � I have HHC � � � � � A blood relative has/had HHC

Name ________________________________________________

Address ______________________________________________

_____________________________________________________

____________________________ Postal Code _____________

Email _______________________ Tel _____________________

� I am a new member

� Please acknowledge my support in the newsletter.

� Please release my name to my local contact person.

Send me ___ brochures and __ posters

___________

___________

___________

___________

___________

___________

___________

Please return to:

Canadian Hemochromatosis Society#272 - 7000 Minoru Boulevard

Richmond, BC Canada V6Y 3Z5

THANK YOU!April, 2004

Annual membership

($30, senior $20, family $45,

professional $55 lifetime $500)

Books: The Bronze Killer $20*

Ironic Health $22*

Hemochromatosis Video $21*

Lapel Pin @ $5

Donation

TOTAL* US dollars for US orders.

For international prices, contact office.Charitable Tax #11921 9160 RR 0001

Contact us!Post #272 - 7000 Minoru Boulevard

Richmond, BC Canada V6Y 3Z5

Phone 604-279-7135

Fax 604-279-7138

E-mail office@cdnhemochromatosis.ca

Toll Free 1-877-BAD-IRON

www.cdnhemochromatosis.ca

Canadian HemochromatosisSociety

Annual GeneralMeeting

Saturday, April 24, 20041:00 pm, Room 340

Richmond Caring Place7000 Minoru Blvd

Richmond BC.Included on the agenda will be a call for

approval of new bylaws.

During Awareness Week help usget the word out. You can distrib-ute posters and brochures to locallibraries, pharmacies, doctors’ offices,hospital, community events boards, etc.Send information to your local media, ortalk to them yourself.

Contact our office for your suppliesNOW.

In partnership with Canadian BloodServices, CHS is supporting a specialblood donor clinic during AwarenessWeek. We are calling on all members inBC to attend the CBS Donor Clinics onMay 25 starting at 11:30 am. Informationand refreshments will be available at eachof the six permanent CBS Clinics in BC.

Clinics are located in Vancouver onOak Street and Downtown, in Kelowna,

Awareness WeekMay 25 — 31, 2004

Prince George, Victoria and Surrey. Mobileclinics will operate in Abbotsford (25th),North Vancouver (26th), Richmond andVernon (27th and 28th) and Walnut Grove(29th). Please call 1 888 236-6283 (1 8882 DONATE) for more information and tobook an appointment. We are asking alldonors who are responding to this requestto sign in a logbook at the clinics. This ispurely voluntary, and will help us track thenumber of donors giving in recognition ofHemochromatosis Awareness Week, andtherefore allow us to determine the suc-cess of the program.

We hope to expand the program to allCanadian provinces and territories nextyear. Those members living in other areasof the country who wish to donate, pleasedo so.