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TRANSCRIPT
Texas Bluebonnet Chapter Newsletter Fall 2013
Meet the President of the Bluebonnet Chapter
My involvement with the Foundation started after I was diagnosed with scleroderma and realized I wasn't getting better. I started going to support group meetings and needed to talk to other people that had this rare disease. I wanted to find out what course of treatment they were on and how I could help myself by listening to other people's experiences. My personal goal for the Texas Bluebonnet Chapter is to continue to reach more scleroderma patients throughout the state by offering support group meetings, patient education events, and hold fundraisers that bring family, friends, patients, and local supporters together. My goals for the Board are to have active board members who are passionate about leading & representing our Chapter to increase the programs & services we provide our members and patients; to successfully carry out our 3-fold mission of Support - Education - Research; and to have a financially stable chapter. I can be reached by email - [email protected] or my cell - 972-342-7797
(Meet the rest of your Board on page 2)
What's Inside: 1-2 Meet Your Board of Directors
3-4 Scleroderma Stories
5-6 Chapter News & Events
7- Proud Parents
8- Artist’s Corner
9- Scleroderma Spotlight:
National Conference
October 12, 2013 - 10:30a.m.... El Paso Patient Event
Featuring Dr. Garcia - Pulmonologist
United Blood Services - 424 S Mesa Hills Dr, El Paso, TX
79912
Contact: Virginia Browne at [email protected]
October 12, 2013...San Antonio Walk
Woodlawn Lake Park
Contact: Jovana Desarden or Cynthia Julson at
October 19, 2013 8:30-12... Gulf Coast Patient Event
Conroe Regional Medical Center-504 Medical Center Blvd,
Conroe, TX
Contact: Virginia Browne at [email protected]
Texas Events at a Glance
Updated Support Group Contact Info
To get in touch with your local support group leader please
click HERE.
Get Connected!
Texas Bluebonnet Chapter
San Antonio Facebook Page
Corpus Christie Facebook Page
Scleroderma Foundation Facebook
Meet your Board of Directors
“There is a lot each of us can do to help the
Foundations three fold mission and it has
been a blessing to be involved. It is very
rewarding to know that we can give back
because I am still in need of the same help
that the Foundation is devoted to.”
-Jacob Vidal Davila
Contact Information
Virginia Browne- [email protected]
Secretary / Programs Chair
I got involved in the Scleroderma Foundation through a friend. My personal goals for being on the board include to the assist board with parliamentary issues and training. I would also like to provide the best service to Texas patients as they deal with the scleroderma through support and education
Peggy Brown- [email protected]
Budget/Finance
Audrey Brouwer- [email protected]
Fundraising & Development
I became involved with the Scleroderma Foundation, after my sister was diagnosed with Systemic Scleroderma. When she was diagnosed there was no way that I could sit by and not try to help in some way. What is my personal goal while on the board? It is to make sure I have done everything I could to have record donations made to the Scleroderma Foundation and that I have done my part to help the questions about Scleroderma and have the answers for those that are not educated about this horrible disease in order for there to be more compassion for those who do. As a Board we definitely have some hurdles to overcome but I know that we can do it. We know that we have our work cut out for us as there are still patients out there that have not yet joined a support group or reached out to us so that we can help them find a group near them. We have a lot of ideas, please reach out to your board and we will help you get setup and guide you through the process.
Jacob Vidal Davila- [email protected]
Patient Support Chair, Advocacy Committee, Juvenile Program Committee, & Fundraising Committee
I have been diagnosed with scleroderma since the age of 17 and have wanted to get involved with the
Scleroderma Foundation for a few years but have just this year been able to get involved more. My main focus
on the board is to give all the support everyone needs when dealing with this troublesome disorder. Being on
the board is a great opportunity to support the Foundation and to ultimately conquer all of the goals that we
have as a foundation. As a member I would also like to see what I can do to open the discussion about a
quantitative research group that focuses on solely autoimmune disease research and treatment as a whole.
Amber Paris- [email protected]
Vice President; Juvenile Chair
I was diagnosed with scleroderma when I was 14 years old. I moved to Texas after I lost circulation in my third
fingertip. The hyperbaric doctor thought the lower elevation (I am from Colorado) might improve my condition.
I had about a 7 year reprieve. When I had another flare up, I decided to get some more information and find
some support and found the Foundation. Since then, I have led the Tarrant County support group and become a
member of the Board. I hope to be able to dedicate time to create a Juvenile Outreach Program in conjunction
with the National Foundation to provide an online support system for the children affected by this illness and
their families. As a whole, my goals for this board are to provide the national mission of support, education, and
research by providing support, information and guidance to our support group leaders, providing programs that
educate our patients and their loved ones throughout the state, and creating effective and inventive fundraising
activities that help us be fiscally responsible and provide needed funding to National for new research to
conquer scleroderma.
Meet Your Board of Directors
Jan Wilkerson - [email protected]
Board Member—Membership
I was asked to become involved by Virginia Browne. I know Virginia from our work together on the Board of Directors of Texas PTA. My daughter, my daughter-in-law, and I all three have autoimmune diseases. I understand the difficulties we all face on a daily basis. The Board should be working to get information into areas where very little support exists.
Emily Woods- [email protected]
President
My personal goal for the Texas Bluebonnet Chapter is to continue to reach more scleroderma patients throughout the state by offering support group meetings, patient education events, and hold fundraisers that bring family, friends, patients, and local supporters together. My goals for the Board are to have active board members who are passionate about leading & representing our Chapter to increase the programs & services we provide our members and patients; to successfully carry out our 3-fold mission of Support - Education - Research; and to have a financially stable chapter.
Tony Rangel- [email protected]
Advocacy
Emily Woods Amber Paris Audrey Brouwer
Jan Wilkerson Jacob Vidal Davila Virginia Browne
Jovanna Gonzalez- San Antonio, TX
"You have Scleroderma." At the age of 14, I had never even heard
such a word. My symptoms of cold fingers and skin changes
started the year before, in which doctors kept saying to "stay
warm" and "stay out of the sun." My mother knew there was more
going on than just being cold.
I was forced to quit playing softball and volleyball in high school
because my hands were starting to stiffen up and curl in. My
joints were inflamed, I wasn't able to swallow my food and it was
difficult to walk. Soon after, I couldn't even jog a few blocks due to
the severe shortness of breath. When doctors realized that
Scleroderma was causing fibrosis on my lungs, they immediately
started me on several toxic drugs to try and slow down the
progression. At the rate this was going, I was told I wouldn't live
past the age of 19.
Fast foward a years, after numerous hand surgeries,
hospitalizations, and years of IV infusions my lung involvement
was considered "stable". Or so we thought.
I was frustrated and angry with seeing every doctor in the book,
being in every hospital, taking so many medications for this
disease all to just be stable for short periods at a time. I just chose
to live and cope the best way I could. I was getting married and
had already had a son. My wonderful life seemed to distract my
symptoms for some time.
Fast forward a few years, after numerous hand surgeries, hospitalizations, and years of IV infusions
my lung involvement was considered "stable.” Or so we thought.
I was frustrated and angry with having to see every doctor in the book, being in every hospital,
taking so many medications for this disease all to just be stable for short periods at a time. I just
chose to live and cope the best way I could. I was getting married and had already had a son. My
wonderful life seemed to distract my symptoms for some time.
Early 2007 was when I hit rock bottom. Getting around in mostly a wheelchair and on oxygen 24hrs
a day, I didn't even look the same. I remember the look on my doctor’s face when he told me there
wasn't anything left that he could think of to help with the lung involvement. I thought to myself
"That isn't true!" I have my whole life ahead of me; all I prayed for was to be a mother and a wife.
I was sent to see Dr. Burt at Northwestern Memorial Hospital in Chicago. He was conducting a study
using healthy stem cells that were showing to reverse or possibly pause the progression of
scleroderma. The study consisted of intense chemotherapy, injections, isolation, and an almost 3
month stay in the city.
I promised my son and my family that I would return home a healthier person. I kept that promise
to my family and just completed my final follow up visit this past November. Instead of my lungs
being "stable" they have improved. I consider having scleroderma a blessing to me. Despite
enduring such pain and setbacks, I find joy and fulfillment in having met so many people in the past
17 years. With pain comes strength, and I choose to LIVE my life one day at a time. I am now one of
the support group leaders in San Antonio. I love our group so much; we are family, and I wouldn't
want anything different.
Scleroderma Stories
Scleroderma Stories
Best-selling author and columnist @Mitch Albom lost his friend
Steve Nickerson to scleroderma earlier this year. He writes
about Steve and his 10-year battle with the disease in last
month’s Free Press. He shares in painstaking detail the damage
scleroderma can wreak on patients. Now it’s our turn. Share
this story today and spread awareness about scleroderma. It’s
a rare opportunity to educate people about a rare disease. Let’s
seize it. Help others know scleroderma.
http://on.freep.com/14quags
Steve Nickerson and Free Press columnist Mitch Albom
Steve Nickerson
Denise Hinojosa San Antonio, TX
I was diagnosed with Scleroderma in January 2007. I had been trying to figure out why my feet were swollen, my body was stiff and my hands would tingle. I saw one doctor for 6 months and was constantly doing blood work and then she stopped returning my calls. She just gave up, but I knew I couldn't. Luckily, I chose a doctor close to home and on my first appointment, he diagnosed me with scleroderma, no blood work needed just a simple handshake was all it took. I hadn't realized my skin was tightening. Then he dropped the bomb, saying most scleroderma patients only live for 5 years, and there was no cure. (Something that just isn't true anymore!) I went to work crying that day, wondering what I would do. My scleroderma progressed pretty quickly, making my entire body stiff including my face, which made it fun to eat. I tried different medications, and nothing worked for me until I tried the antibiotic therapy, which worked wonders and most of my skin tightening reversed except for my hands. In 2011, I started asking my doctors about pregnancy and I was happy that they all agreed there was no reason not to proceed. I am happy to say I gave birth to my daughter on February 7, 2013 and had no complications during my pregnancy or labor that were scleroderma related. At times I felt cursed for having scleroderma, but now it only makes life all that much sweeter because I value everyday and every accomplishment so much more.
Upcoming Events
San Antonio 5k Walk/Run
Saturday, October 12th 2013 Woodlawn Lake Park, 1103 Cincinnati Ave., San Antonio, TX Registration Time: 7:30 a.m. - 8:30 a.m. Balloon Release: 8:45 a.m. Walk Time: 9:00 a.m. This is the first walk/run for San Antonio, and we are excited to
have it in such a great big city. Gather your friends and take
pledges to complete the walk or run. You can participate solo or if
you have a team. We will have prizes for most raised funds,
individual, and most funds raised for teams. Come up with
something creative, team name, team costumes, themes or most
awareness. We will have plenty of activities for the kids to do, so
bring all your friends and family. Also, we need as many volunteers
as we can get!
Be a part of the Foundation's largest fundraising events. Because
of generous donors, volunteers and participants – just like you –
we are able to get one step closer to finding a cure for
scleroderma.
For more info/To register: www.scleroderma.org/SAwalk
Contact: Jovana Desarden or Cynthia Julson at
Chapter News & Events
New Dallas Support Group
The new Dallas Support Group started meeting on March 10th with new people, as well as some “old” friends from the
former Allen group. We have a great place to meet, and so far have had several really good meetings, getting acquainted
with one another and learning about Social Security Disability and yoga, as well as everyone’s favorite “snake oil” remedies.
In our few short months, we’ve had one leader get married and one have surgery….busy times! Congratulations, Nancy!
And Get Well Quick, Joey! It’s great to have 3 leaders on our team…..all dedicated to making this group rock!
Thanks to all in our group who participated in the walk in June and the Patient Event in April. We appreciate you! This
month (August) we’ll discuss Emergency Room Preparedness and National Conference.
Anyone who’d like to visit our group is always welcome….2nd Sundays at 3:00. Call for directions and come by and check us
out!
Contact: Joey Briggs - [email protected]
Patient Education Programs 2013
Virginia Browne
Program’s 2013 year began April 13 in Dallas where
with the assistance of Tonya Fyke, Nancy Harbutz, Joey
Briggs and the Dallas SG we presented “Ask our
Doctors”. From there we traveled to Houston where
Ellen Harris and the Houston Support Groups planned
and implemented two amazing sessions; during April
the topic was “Fatigue in persons with Scleroderma”
and July “Lung Involvement in Scleroderma”. On
October 12 we will be in El Paso Texas where Dr.
Hernando Garcia will present “Pulmonary
Manifestations of Scleroderma,” Marianne Nelkin,
Manny Guterres, Billy McCain along with the El Paso
Support Group are busy putting the final touches in
order. Patient Education 2013 events will conclude
October 19 in Conroe where Aubrey Brouwer and the
Conroe Support Group will host a session on “Pain
Management and Scleroderma.”
It’s humbling and a blessing the way everyone has
come together to make our patient education events
very personal and just what was / is needed…great
topics, discussions and inspiring presenters. This year
has been BIG …as stated “everything is BIG in Texas”…
especially the HEARTS…Thank you Texas doctors,
patients and volunteers.
Special thanks and appreciation to Drs. Melissa I
Costner, Gowri Balachandar, Dallas; Gloria Salazar,
Zeenat Safdar, Shervin Assassi, Houston; Hernando
Garcia, El Paso and our president Emily Woods,
Frisco.
Chapter News & Events
Zumbathon
The Zumbathon, was held on March 10, and it was hosted by
the Corrinas family in San Marcos. The event included Zumba
dancing and a scleroderma information table. It was a great
success, and the family did an incredible job memorializing
their mother, who had died earlier of scleroderma. They are a
wonderful family and worked very hard to put this event on
for our community.
Houston Scleroderma Mall Walk
The Houston walk was held on Saturday, August 10th at
Northwest Mall. The walk this year had a great turn out with
participants raising over $12,500. The event included a live
DJ, breakfast goodies and a raffle.
Recent Events
Dallas/Ft. Worth Walk
This walk took place on June 29th at
Collin Creek Mall, 811 N. Central Expo
in Plano, TX. Participants enjoyed
family fun activities, including face
painting, tattoos, a drawing contest,
live DJ and a raffle.
The Dallas/Ft. Worth walk raised
$9,802.00 this year.
Congratulations!
Austin/San Marcos Support Group
We are no longer meeting on a regular basis as a group. A
few of us are meeting on the fourth Thursday of the month
starting in September for lunch.
Contact: Joan Maril - [email protected]
For more details.
Proud Parents
Juvenile Scleroderma Patients Raise Money & Awareness Gabrielle’s Quinceañera
Brenda Quintanilla On March 16, 2013, Gabrielle (Abby) Quintanilla celebrated her Quinceañera (15 years). Abby was born on March 26, 1998 in San Antonio, TX. She resides in Karnes City since birth. At the age of 5, she was diagnosed with Systemic Scleroderma & Raynaud’s. At that time, the doctor was unsure how she would respond to treatment, but as of today she has remained stable due to her medications and faith. It has definitely been trying for her, knowing that she was different than other teenagers. She takes numerous medications, and needs more rest then other teens. She, however, has never let scleroderma take control of her. She has participated in dance classes, youth cheerleading, youth basketball, and youth golf. In 8th grade she was ranked #1 in a class of 65. She now is currently a freshman, where she plays the saxophone and is a twirler in the band. She also participates in UIL events such as News Writing and has advanced to regionals. Abby also devotes her time to her church by attending, serving as an altar server and helping with vacation bible school. I am very proud to say that Abby is my daughter. I know that she faces many challenges, as well as everyone who has scleroderma. I hope that one day a cure may be found and help ease the pain of all those who suffer. Thank you so much for your help to help raise awareness and over $1600 to help find a cure!!
Shannie’s BBQ Fundraiser
Julie Carnline’s daughter, Shannon (Shannie to everyone who knows her) was
diagnosed with morphea back in 2008. Two years ago, Shannie was able to
receive UVA-1 phototherapy treatments in Dallas and, while we were living
there, she decided she wanted to start a camp for the other kids who have
scleroderma and their families! It has taken two years for God to guide us to
the right path, but since January things have really been moving. We have been
able to set up a nonprofit organization - Camp Diasozo - we have filed for our
tax exempt status and now we're working on our first big fundraiser. It's been
exhausting and exciting all at the same time!
Camp Diasozo hosted a BBQ fundraiser on Sunday, June 9th from 3-9 p.m. at
the Encino Park Community Center and extended an invitation to everyone in
the scleroderma support group and their families! They had a BBQ dinner
available, live music, a silent auction, a raffle, giant Jenga and ring toss games,
horseshoes, volleyball, cornhole, popcorn and peanuts for sale, and even a
cotton candy machine for the day!
For more info on Camp Diasozo visit: www.campdiasozo.org
Artist’s Corner
In this section we would now like to include images,
artwork, poetry, short stories etc. that help you
express how you and/or your loved ones live with
and manage your scleroderma.
If you have something you would like to share in the
upcoming newsletter please email it to Jasminne
Mendez: [email protected]
Word Docs, PDF, JPEG files only please.
Photo poem by Jasminne Mendez
So, How Are You Feeling Today?
Lupe Mendez
When you say the word/pericardium/I think red/I think viscous/I think fragile/I think full/I don't think puncture/I
don't see wound/I don't want to know/you can't breathe right/can't catch a gasp/can't sleep laying down/can't
function/You are younger/you take plenty of pills/you have apps on your phone I have to know about/when you fall
down/if you fall down/I’m supposed to know/what to do when your fingers turn blue/what to say when they
mention renal failure/how to keep a calm demeanor/I tell your parents you are in some ICU/I got the question/are
you taking care of her/I just sigh/I just rub your feet/I just wake you/don't yell at me/yell at your pericardium/that
swells up/a three liter coke bottle full of heavy/fluid/ I don't sleep/you don't sleep/when we do/its two hours/I have
bad dreams/about your heart sack/that wraps you up/clings around your lungs/a knot around your heart/that
traipses around a pulse.
You are laying there/wrapped in blankets/wrapped in silver needles/so calm/your face is lying/I watch your ribs
rise/bones expand with a jerk/I hear a click/a thud/a white bone is aching/in your side/I should leave/I should get
you a pitcher of ice water/fill your cup runneth over/lavish you with unbridled rest/you are in pain there/trying not
to make a move/make a sound/make a tear fall/stream down a window pane/looking out into the woods/behind
your eyes/in the distance/there are trees/blowing in the gust of wet winds/a few of them/dry and bending/they
expand/they click/twigs inside them break/they grow rigid/they ache/that’s the pain you feel/splinters in your
heart/its burn/you’re awake.
It’s a waiting game/new tubes of blood/you don’t want to be here/see it in your eyes/sunken/dark/you love to hate
me/when you are here in the observation room/wires sticking out of your shoulders/out of your ribs/to get a
pulse/to get out of here/you hate me/for brining you here/to be tested/you teach the pre-med class as they walk in
your room/they ask you your history/you show them your heart/in your file/you smile at them/you cry when they
leave/you scurry/you fumble around with the tubes/the cords/the drops of tears/the size of stolen bread/dry them
away/they might want to study that too.
Should I Refinance?
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National Conference
By Jacob Vidal Davila
The Scleroderma Foundation National Conference has been explained as a great experience and one that
I had been looking forward to all year long. This year’s conference is my first time, so I was surely waiting
to see the event unfold.
After being there firsthand, I can only say what it means to me to have been a part of it all. First off, there
is so much going on for everybody to get help with and learn more about everything concerned with
scleroderma. Information on conditions that we all may face, to products that we may need were there
to create a pool of knowledge for each of us. All of the doctors, authors and professionals that presented
were very helpful and gladly answered all the question asked. The atmosphere is really what amazed me
the most. I felt as if everyone was a friend already and that we just needed to catch up on what has been
going on with ourselves. The Foundation did a great job doing all the hard work organizing the Knock Out
Scleroderma conference. The Georgia Chapter definitely went out of their way to make the place feel full
of the warmth that Georgia is known for, and did an amazing job. I met and was able to talk to many of
the awesome people that I have heard of and was honored to meet everyone. I made a lot of friends
from all over the US to keep in touch with. This year was a big year for all the juveniles who attended the
conference. The Foundation put together a great conference designed for them in mind and all the
parents could share in the experience. The awards dinner and social activities allowed us to interact with
each other and all of our new friends I made along the way at the conference. This interaction gave me
countless pointers and advice that I will need in the future, needless to say that is was just so much fun.
It was definitely an emotional and heart warming experience that I will always cherish. I am already
looking forward to next year as the conference is heading to Anaheim. Another year of friends and fun
encounters as well as soaking in all the new information is going to be great. I can't wait till next year!
Scleroderma Spotlight: National Conference