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FAMILIAL DYSAUTONOMIA HOPE
Newsletter of September 2001
Dear Friends,
A tremendous tragedy befell the world on Tuesday morning. Who of us has not cried for the thousands dead? Each of those individuals, lives full of dreams and hopes and plans, are now gone. How do we pick up our lives, how do we go on, with the void left behind? The sage words of Rabbi Noah Weinberg, writing for Aish HaTorah, may help us find the answer. From the article “THE MADNESS”, by Rabbi Noah Weinberg. Found in its entirety at http://aish.com/ar.asp?an=2662:
“FIGHTING FOR A CAUSE
Our precious world is threatened by twisted minds who think the way to heaven is to murder innocent civilians.
We have only one chance to live a normal life. We have to look this evil in the eye and defeat it. Not passively and sluggishly. But with the same degree of passion, and the same level of commitment, that the evil is being waged against us.
Every human being has a personal responsibility to fight this epidemic.
Concretize your feelings about the World Trade Center tragedy. Say out loud: What did I learn from this? What am I going to do about it? And if I’m not going to do anything about it, why not?
Pledge yourself to fighting for good, for justice, for truth. Look around and see the problems facing us today. Ultimately, we are each committed to a cause. Whether it is world peace, political reform, or fighting racism – everyone is dedicated to something.
In some sick, misguided way, even the terrorists are fighting for their cause.
Choose your cause. Carefully. Figure out what you are willing to die for. And when you indeed live for that cause, you will have unparalleled power and purpose.
Once you have answers, make a plan to implement positive change into your daily life. Start slowly, taking one small step at a time, so not to be overwhelmed. Keep your eye on the goal and gauge your progress every day.” (end of excerpt)
At FD Hope we have passionately made the cure for familial dysautonomia our cause, and we have begun to create the positive changes needed to make a difference. The devastation that we witnessed this past week was a vivid demonstration of the fragility of life, something of which many of us are all too aware. Our hearts go out to the families who lost loved ones in Tuesday’s tragedy. And we pledge our vow to continue our own fight against FD, with the memory of their loss in our hearts.
With deepest condolences to all those who are in mourning,
On behalf of the Board of Directors of FD Hope,
Sonia Peltzer, MD
NOTE FROM THE EDITOR:
We of FD Hope wish all of you La Shana Tova, a good New Year. All of us in the FD community share a common cause ---that our FD loved ones survive, enjoy better health, and finally be cured. We therefore ask you to read this newsletter with a caring heart. In it you will find out about what we have done and are continuing to do to discover better treatments and a cure for FD, and to educate the world about FD, so that all who need to will seek out the carrier tests for this, as well as other Jewish genetic diseases, before planning to have a child.
At the end of each article you will find not only the writer’s name but also their e-mail address. Please feel free to contact them for comments or questions. You may wish to be part of our urgent mission of hope.
--Mavis Feinberg, mavis.al@...
LETTER FROM OUR PRESIDENT
Dear Friends, This time of year is one of introspection and soul-searching. For most of us the High Holy Day prayers to be inscribed and sealed in the Book of Life are full of meaning. The question “Who will die and who will live?” are the words that many of us carry in our hearts daily. 12% of the individuals listed in the 1998 FD Directory have lost their lives to this horrible disease. The median age at death was 24 (with a mean of 25), while the median age of the survivors is 20 (with a mean of 22). We cannot allow FD to continue to take its toll on our families.
FD Hope is committed to finding a cure urgently. Our children cannot wait. Please help us. In this newsletter you will find articles by our Board members on the establishment of the David Rancer Memorial Research Fellowship, an interview with the first recipient of this research fellowship, progress reports on our efforts to include FD in state disability funding, organ donation, our new video on FD to educate the public, and our programs in both northern and southern California to develop interest in FD carrier testing. Please consider participation in these efforts. If you have any other ideas or would like to become more involved with FD Hope, please send an e-mail to any address listed in this newsletter.
FD Hope has been working hard over the summer to raise funds and promote projects that will help our children and adults with FD. We have received over 500 donations to help us fight the battle against FD. We strive to remain fiscally responsible with these donations and despite our start-up costs as a new foundation, we have been able to direct 80% of our expenditures towards research and education. We hope to raise that percentage in the coming year.
At our national meeting in Houston in July, our Board developed plans for several projects which will further our mission to find a cure and expand treatment options for those with FD. We look forward to sharing news of our progress with you. Feel free to share your thoughts and priorities with us. On behalf of the Board of Directors of FD Hope, I pray that we are all sealed in the Book of Life for a healthy and happy year.
----Sonia Peltzer, M.D., President of FD Hope, speltzer2@...
(828)466-1678
FD HOPE FUNDS FELLOWSHIP AT FORDHAM
At its meeting in Houston the FD Hope Board made its first award of the David Rancer Memorial Research Fellowship in response to a request for research funding. Dr. Berish Rubin, one of the lead researchers to announce discovery of the FD gene last January, presented a proposal that, among other activities, will begin to look at therapeutic options for FD patients. The funds will be used for the creation of a graduate fellowship in Dr. Rubin’s laboratory at Fordham University. The selected fellow will devote all of his or her time to FD research under Dr. Rubin’s direction. The fellowship has been named in memory of a young man who lost his fight with FD less than four months after the discovery of the gene.
During his presentation to the Board, Dr. Rubin also covered several other subjects. These included an update on his research work and the leads he is pursuing in the search for a treatment and a cure and a summary on what is now known about the genetic defect and the role of IKAP in the disease. Dr. Rubin also discussed the importance of arranging for organ donations from deceased victims, as a critical tool in pushing forward research to understand the mechanism of this disease.
----Mike Rancer, mrancer@...
THE IMPORTANCE OF PLANNING FOR THE FUTURE
In the sad event of the “unthinkable”, we parents of FD patients can choose to give special meaning to their lives. Please consider calling 1-800-59-BRAIN to make your child’s organs and tissues available for research. Your donation could help in the discovery of a treatment and a cure for those suffering from FD.
----Ann Slaw, Anio1170@...
PLEASE MEET OUR FIRST FUNDED FELLOW!
We would like to introduce all of you to Brian Fox, the recipient of our first David Rancer Memorial Research Fellowship award. Brian says, “I am honored and excited about the award. I hope to contribute to Dr. Rubin’s research on FD. Dr. Rubin and Sylvia are great role models. They are dedicated to the project, but more importantly to the people suffering from FD, including the families of those affected. All of us in the lab have taken our projects quite personally and are all committed to working as hard as we can to help understand IKAP and hopefully cure FD.” Brian grew up in the Philadelphia area and attended college at Penn State. He came to Fordham to be close to his fiancé, and they will be married next May. Speaking of his work in Dr. Rubin’s lab over the summer, Brian says, “I thought that working on something that few people are working on would give me the opportunity to help people that the big pharmaceutical companies won’t help because it is not profitable enough. Sylvia and Dr. Rubin have shown me the hard work and dedication that it takes to succeed. I try to work as diligently as they do, and keep pushing forward.” And, Brian, we all wish you great success!
----Mavis Feinberg, mavis.al@...
FD HOPE PRODUCES DRAMATIC EDUCATIONAL VIDEO
“Lights! Camera! Action!” In an effort to educate the public about FD and quickly raise money for a treatment and a cure, FD Hope has sponsored a short video featuring a child who suffers from this devastating disease, highlighting the most common features of FD. The producers at A & E took on the project, offering their services pro bono. Moving rapidly, they put together a top-notch team of musicians, voice-over gurus, and photographers. The result is nothing short of spectacular. The video features a child with FD who one minute is swinging at the playground and the next minute is retching up a storm. The stark contrast between “normalcy” and the “crisis state” is dramatic. Everyone who has seen the video reaches for the Kleenex (and their checkbooks). It packs a powerful emotional punch.
FD Hope’s desire to educate and raise funds using “a window into the life of a child suffering from FD” has been realized with this video. As parents, educators and fundraisers, we will now be able to stand in front of audiences and not only tell, but show, the people just how fragile our children’s lives are.
----Ann Slaw, Anio1170@...
LEGISLATIVE EFFORTS SUPPORTED BY FD HOPE
We continue to work hard to get our states to provide care and training for FD patients. Sondra Mallow, our Donor Development Co-Chair, writes “We continue to work on legislation in Florida to add familial dysautonomia to the list covered by Developmental Disabilities Services, Chapter 393. We wish to thank Senator Debbie-Wasserman-Schultz and her staff for their hard work --- and a special thank-you to Stephanie Grutman, Legislative Assistant.”
------- Scott Kutner, who has also been working tirelessly with the California State Legislature, for the same purpose, tells us that “there will be a hearing this spring, at which time the State Department of Developmental Services will report on their development of protocols to include FD for their services, through administrative rather than legislative means.”
-------- We thank Sondra, Scott, and all others who are working to ensure that all FD patients will have the care and training they need provided by the appropriate governmental agencies. If you would like to work on this project in your own state, please feel free to e-mail Sondra or Scott about how to get started.
---Sondra Mallow, smallow@... / Scott Kutner, skutner@...
SPECIAL NOTE:
There will be a special event on October 21, 2001, when a Jewish Genetic Program will take place in Jacksonville, Florida, at our local Jewish Community Alliance. If you would like to have a similar program in your Jewish community, please contact me for details, brochures, and speaker information. This is a great way to reach many people at once. Many of your local Jewish Community Centers and other Jewish organizations would be pleased to support such a program.
---Sondra Mallow, smallow@...
EACH OF US CAN MAKE A DIFFERENCE!
In the past couple of months we have had a couple of opportunities to make a difference in the effort to educate, advocate, and fund on behalf of our children with FD. First, we celebrated Evan’s Bar Mitzvah, and our son chose FD Hope as both his tzedaka and his mitzvah projects. He asked all those attending, through an insert in his invitations, to honor him with a gift to FD Hope instead of giving him a gift, saying “all I really need is a cure.”
Another opportunity presented itself when I learned of a community-wide screening for Tay Sachs. I contacted Jewish Family Service about the FD carrier test, which they will plan to do next year. I then contacted the Genetics Department at Baylor University, and they will offer the FD carrier test at a community-wide screening which will take place in November. Instead of testing as they had planned for only the major mutation, I put them in touch with Dr. Berish Rubin, who has shared his know-how with them, so that they will now be testing for the minor mutation as well. ---- Each of us can make a difference in educating, promoting, advocating, fund raising --- for our children’s sake. It matters not how large or small the outcome ..... it only makes a difference that we do it!
----Chava White, socialworker@...
CARRIER TESTING FOR FD
Mike Rancer is hard at work organizing a program of public education about all Jewish diseases and about carrier testing through University of California at San Francisco, to hopefully be funded by the Jewish Federation. Mavis Feinberg is busy in southern California with the Children’s Hospital of Los Angeles. In fact, the FD testing there was originally going to include only the major mutation. However, Mavis put the lab director in touch with Dr. Rubin, who is so willing to share that he has enabled Children’s Hospital to test for both the major and the minor mutations. Here is a partial list of where the FD carrier test can be taken:
--Albert Einstein College, Yeshiva University, Bronx, NY - 1-877-327-5962 (both major and minor mutations);
--Mt. Sinai Hospital, NYC,NY - 1-212-263-5746;
--New York University, NYC,NY - 1-212-263-5746;
--Children’s Hospital of Los Angeles, CA - 1-323-669-2271 (both major and minor mutations);
--Dor Yeshorim, Brooklyn, NY - 1-718-384-2332;
--Dor Yeshorim, Israeli Office, Rechov Strauss 21, Jerusalem 91506, Israel (both major and minor mutations).
The fact that this carrier test exists means that no more babies need to be born with FD! Let’s all get the word out on this.
-----Mavis Feinberg, mavis.al@.../ Mike Rancer, mrancer@...
* * * NOTE TO OUR READERS:
If you would like to make a donation to help us continue the good work you have read about in this newsletter, please mail your tax deductible check, made out to “Familial Dysautonomia Hope”, to:
Dr. Kenneth Slaw,
1170 Green Knolls Drive,
Buffalo Grove, IL 60089-1144.
---- If you are getting a copy of this newsletter through the regular mail and have an e-mail address, please send it to us, so that we can use the money thereby saved to further our research projects. ---- Thanks!
FD Hope Newsletter:
Tell us what you think. E-mail suggestions to mavis.al@...
To subscribe/unsubscribe, e-mail your request to mavis.al@...
For more information on FD or FD Hope, go to www.fdvillage.org
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