Dysautonomia Foundation, Inc.

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FD News
May 2008

In this issue:
FD Day 2008
FD Families in the News
Upcoming Events
Government Support
Noteworthy News and Events
Shop & Search the Web for the Foundation
Recent FD-Related Research Publications

FD Day 2008


The 23rd Annual International FD Day conference will be held at NYU Medical Center on June 1st. Families, doctors and researchers are invited to listen to presentations and speak to experts about FD-related developments in treatment, research and lifestyle.


Horacio Kaufmann, MD, the newest member of the NYU Dysautonomia Center team, will be one of the featured speakers. Along with Dr. Kaufmann, Felicia B. Axelrod, MD, Susan Slaugenhaupt, PhD, and Gabrielle Gold-von Simson, MD, will be presenting updates on topics including patient care, clinical research, FD mouse model, and the use of kinetin in the treatment of FD.


In the afternoon, the presenters will be joined by FD experts David Feldman, MD, Albert Matalon, MD, Channa Maayan, MD, and Mark Sloane, MD, to meet with families in small groups for interactive discussions on the topics of supportive care, clinical research and genetic research.


During the day, there will be a wide variety of activities for children, teens and young adults that will include a balloon artist, an animal show, a magician, photo session, games, crafts, and airbrush t-shirts. For FD adults, there will be a casino room and dinner at a local restaurant.


Please join us
for FD Day

Let us know how many are in your group:




FD Families in the N

The family of Rebecca Newman was featured in an article in the Franklin & Marshall College school magazine. The article focuses on "Ordinary Families, Extraordinary Lives"

The family of Peter Sonenshein was featured in an article in the online publication MainLineLife.com. The article, entitled "A difficult diagnosis," focuses on familial dysautonomia and other Jewish genetic diseases discussed at a recent symposium.

The family of Michael Brenner was featured in an
article in the Journal News about genetic screening for Jewish genetic diseases. The article, entitled "Families See Hope in Gene Tests," urges the at-risk population to get tested for all Jewish genetic diseases.
Do you know of
an article that reports on news related to FD?

Please let us
know so we can share it with the
FD community. 

Upcoming Events

Bowl-a-thon May 18 -- Join us or sponsor a bowler in our annual Long Island bowl-a-thon in Woodmere, NY. Great raffle prizes!
FD Day June 1
-- At NYU Medical Center. Program begins at 10 AM.
Long Island Golf Outing June 17
-- Meadow Brook Club in Jericho, NY.
Chicago Golf Outing July 28 --
Hillcrest Country Club, Long Grove, IL
Cycle Tour October 12--
The 5th Annual Tour de Foliage features 25 & 50 mile routes through scenic towns of Westchester County. Register to ride, sponsor a rider, sponsor the event, or volunteer to help with the event.
We need your help!

Volunteer to help at one of our events.
Please contact us at
info@famdys.org or
(212) 279-1066 

Government Grant Support

Thanks to the efforts of the NYS Assembly majority, and especially due to the efforts of Assemblywoman Nettie Mayersohn, Assemblywoman Audrey Pheffer, and Assembly Speaker Sheldon Silver, the latest NYS budget includes an appropriation of $50,000 for the Dysautonomia Foundation.

The funding from the state of New York will be used to help support the NYU Dysautonomia Center. The Foundation is pursuing grant opportunities from federal, state, and local government sources, as well as from corporate and private sources. Over the last two years, substantial grants have been received from CIBC World Markets and the Dorothy B. Hersh Foundation.
Do you know of a public or private grant program we should pursue?>
 Please contact  the Foundation office and let us know.


Noteworthy News & Events

GINA (Genetic Information Nondiscrimination Act) protects people from discrimination based on genetic traits. Bills have passed in both the House and Senate, and GINA now awaits the signature of the President to become law. With this legislation, individuals who are carriers for a genetic disorder cannot be discriminated against by employers or insurers. The Genetic Alliance, of which the Dysautonomia Foundation is a member, was one of the groups spearheading the push for this legislation.

The Jewish Genetic Disease Consortium (JGDC) educates the Jewish Community and the medical community about the need for carrier screening for Jewish genetic diseases. The JGDC provides public education, conducts grand rounds programs at hospitals and also helps to facilitate free and subsidized genetic screening for the at-risk population.
The Dysautonomia Foundation is a founding member of the

Do you know someone with FD who is an artist? VSA arts invites entries from young artists with disabilities (ages 16 - 25) for the  Green Light Awards The program will award one Grand Prize of $20,000, one First Award of $10,000, one Second Award of $6,000, and twelve Awards of Excellence of $2,000 each. Paintings, drawings, prints, photography, films and sculpture can be submitted.

The Sprout Film Festival showcases works by and about people with disabilities. People with developmental disabilities as subjects and performers remain marginalized in film and television. This festival, at the Metropolitan Museum of Art on May 9 -11, aims to raise their profile.

The film
Including Samuel examines the educational and social inclusion of youth with disabilities as a civil rights issue. Screenings are being held around the country.
Send a
Tribute Card in honor or in memory of someone special.

Visit our
website or contact us by mail.
We'll send a tribute card or a sympathy card with your personal message.

Artists, we need your help!

We need upbeat, colorful artwork for the covers of a new set of FD greeting cards. Send submissions to info@famdys.org


Help the Dysautonomia Foundation when you
surf the web or shop online.

Use GoodSearch  to search the internet, and they'll make a donation to the foundation. There's no purchase required; just start your search from their site. On your first visit, please select Dysautonomia Foundation as your cause.

Shopping online? Start at iGive, and they'll donate a portion of your purchase payments to the foundation. There's no cost to you, and you can shop at all your favorite sites, including Best Buy,  iTunes, Barnes & Noble, Staples, Home Depot, Saks, and hundreds more! On your first visit, please select Dysautonomia Foundation as your cause.

Suggestions? Comments?

We welcome your advice. Please contact us at
info@famdys.org or
(212) 279-1066

Recent FD-Related Research Publications

Each of the the following research publications includes at least one author who has, at some point in his or her career,  been funded by and/or participated in conferences sponsored by the Dysautonomia Foundation.
Weese-Mayer DE, Kenny AS, Bennett HL, Ramirez JM, Leurgans SE.
Familial dysautonomia: Frequent, prolonged and severe hypoxemia during wakefulness and sleep. 
Pediatr Pulmonol. 2008 Jun;43(6):624-625

 Chariot A, Creppe C, Cornez I, Chariot MA. 
In Process Citation
(IKAP - Elongator)  Bull Mem Acad R Med Belg. 2007;162(5-6):315-22

 Goldstein DS, Holmes C, Axelrod FB.
Plasma Catechols in Familial Dysautonomia: A Long-term Follow-up Study.
Neurochem Res. 2008 Mar 21

Johansen LD, Naumanen T, Knudsen A, Westerlund N, Gromova I, Junttila M, Nielsen C, B�ttzauw T, Tolkovsky A, Westermarck J, Coffey ET, J��ttel� M, Kallunki T.

IKAP localizes to membrane ruffles with filamin A and regulates actin cytoskeleton organization and cell migration. 
J Cell Sci. 2008 Mar 15;121(Pt 6):854-64. Epub 2008 Feb 26.

Gold-von Simson G, Leyne M, Mull J, Rolnitzky LM, Goldberg JD, Berlin D, Axelrod FB, Slaugenhaupt SA.
IKBKAP mRNA in peripheral blood leukocytes: a molecular marker of gene expression and splicing in familial dysautonomia.
Pediatr Res. 2008 Feb;63(2):186-90.

Axelrod FB, Gold-von Simson G.
Hereditary sensory and autonomic neuropathies: types II, III, and IV.
  Orphanet J Rare Dis. 2007 Oct 3;2:39.


FD Research Conferences

Approximately every two years, the foundation sponsors a conference for researchers to discuss current projects and future directions for  studies related to FD.

The next research conference is being planned for September 2008.


Dysautonomia Foundation, Inc.
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