Dysautonomia Foundation, Inc.

Grant Helps Fund FD Clinical Research

The Dorothy B. Hersh Foundation awarded $210,000 to the Dysautonomia Foundation for FD research equipment. The Hersh Foundation, a philanthropic organization based in New Jersey, provided the grant for the purchase of medical and diagnostic equipment for the FD Research Laboratory at NYU.

This is the third such grant from the Hersh Foundation since 2004, and we are extremely pleased that they continue to recognize the unique value the Dysautonomia Center has in the FD community. Previous grants funded the acquisition of specialized equipment that allows doctors to evaluate many autonomic functions. The current grant will provide funds for the purchase of specialized equipment for ongoing FD clinical research studies. Dr. Horacio Kaufmann, Director of the FD Research Lab, will use the equipment to obtain extremely precise measurements of a wide range of autonomic parameters.

 
The Dysautonomia Foundation's 2008 FD Research Conference will take place September 18^th and 19^th in New York City. Experts in the field of FD will come together to share ideas about current and future directions for basic science research related to FD, including animal models, genetic therapies and the function of IKAP/elongator. Details about the conference can found at  www.famdys.org/conference2008.php

This year’s research conference will focus on basic science projects. In 2009, the Dysautonomia Foundation will sponsor a research conference focusing on clinical research issues.
 

 
FD Day

The 23^rd annual FD Day conference took place on June 1, 2008.  Approximately 150 doctors, patients and family members of people with FD attended to hear presentations on FD research and treatment, and to participate in Q&A sessions with many of the world’s foremost authorities on FD.     

In the morning, doctors and researchers gave presentations on the latest in FD care and research. Presentations included results from recent clinical and basic research projects, plans for the use of new FD therapies and a review of the use of existing drugs and other supportive therapies for the management of FD symptoms. A list of speakers and abstracts of the presentations can be found at www.famdys.org/FD-Day-2008.php

In the afternoon, the presenters were joined by several other FD experts for question and answer sessions which were conducted in small groups, allowing every family member a chance to ask questions about current and future FD research and treatment projects.

In addition to fabulous balloon decorations, there was a magician, a balloon artist, a photo favors booth and an airbrush t-shirt booth to entertain children and young adults.  New this year, the entertainment program also included a casino room set up for teens and young adults (complete with a professional black-jack dealer, roulette wheel and real slot machines), and theater-style movies for kids of all ages. Photos from the day’s activities can be found at  www.famdys.org/FD-Day-2008-photos.php.

 
Scott Fass, a 28-year-old man with FD, has been the inspiration for three FD Bowl-a-thons.  This year, Scott’s cousins, Amanda Oppenheim and Cori Sirota, organized the Third Annual Long Island FD Bowl-a-thon and signed up nearly 100 bowlers to participate and solicit sponsors for the event. 
Through raffle sales and sponsorships, the event raised over $30,000.  Cori’s brother Jared organized the first two Long Island bowl-a-thons in 2006 and 2007.  The three events, all of which have been held at Woodmere Lanes in Woodmere, NY, have raised a total of over $125,000.
 

Frannie Cohen, a young lady with FD, and her friend Madison Madrazo, both from North Carolina, are organizing a bowl-a-thon for their mitzvah project. If you can’t make it to Carolina Lanes, you can participate by sponsoring a bowler. It’s easy to support Frannie and Madison right now by sponsoring them at: www.famdys.org/Frannie/. This event was inspired by another young lady with FD, Simi Steiner, who organized an FD bowl-a-thon for her mitzvah project in December 2008.

 
FD Golf Outings

 
There have been three FD golf outings since May, and all have been great successes with fantastic weather. 140 golfers gathered on June 17^th for the Twelfth Annual FD Golf Classic at Meadow Brook Club in Jericho, New York. Paul Wexler, Steve Fass and Paul Sunderland co-chaired the all-day event, which included brunch, 18 holes of golf, dinner, cocktails and an auction and raffle with fabulous prizes.

 
In Long Grove, Illinois, over 90 golfers attended the Fifth Annual Dysautonomia Foundation Golf Classic on July 28^th at Hillcrest Country Club. Since its inception in 2004, Gregg Meyers has organized the event, which includes golf and dinner.

 
Adam Posnack coordinated a new FD Golf Benefit at National Golf Links in Southampton, New York on May 13th and 14th. It was a fantastic event featuring two days of golf and an overnight stay in one of the country’s most exclusive golf clubs.
 

Participants at all three golf events had a great time while helping to raise vital funds for FD treatment and research. The Dysautonomia Foundation is grateful to all the participants and organizers of these events for their generous support.
 

 
The Fifth Annual FD Cycle Tour will be held on October 12, 2008. With 25-mile and 50-mile routes, raffle prizes and new collector’s edition FD cycle jerseys, this event gives riders a chance to enjoy the Northeast’s finest fall foliage while riding through Westchester County, NY. For those of you who do not ride, you can still enjoy the foliage and festivities by volunteering to help out on the day of the event and cheering on the riders as they cross the finish line.
 
Please support the event by sponsoring a mile marker or sponsoring a rider. Rumor has it that Dr. Felicia Axelrod and Dr. David Feldman will be among this year’s participants; you can sponsor them online. Visit www.fdcycletour.org for more details.

 Of Interest

 
FD People in the News

NYU Physician, a quarterly publication of the NYU School of Medicine, featured Dr. Felicia B. Axelrod in the Summer 2008 issue. The article highlights Dr. Axelrod’s career-long dedication to FD and her current research into the potential kinetin has for FD treatment. Click here for a PDF of the article.

 
FD Research Fellowship

 
The Department of Neurology at NYU School of Medicine has established a fellowship program at the Dysautonomia Center. Alejandra Gonzalez-Duarte, MD is the first to join the research team at the Center in this position. She comes to the Center following a NeuroAIDS Fellowship at Mount Sinai School of Medicine and will collaborate with the team to pursue their goals in research and care.
 

 Donor Wall Reception

 
The beautifully designed Wall of Giving has been erected and is now on display at the Dysautonomia Center at the NYU Langone Medical Center. The wall recognizes the generous donors who helped establish the new FD professorship and supported the creation of the new Dysautonomia Research Laboratory.  
 
The endowed professorship, named in honor of Dr. Felicia B. Axelrod, was awarded to Dr. Horacio Kaufmann in October 2007. Along with the Carl Seaman Family Professorship, awarded to Dr. Axelrod in 1990, these are the only two such professorships in the world endowed specifically for the study of FD.
 
Our sincerest gratitude goes out to everyone who funded the professorship and made all of the recent improvements to the Center possible, and we invite all who donated to a reception at the Center on September 9, 2008 from 4-7pm.
 

 
Greeting Card Contest!

 
The Dysautonomia Foundation is excited to announce another greeting card artwork contest. We invite everyone to submit inspiring, uplifting, creative artwork for a new series of FD greeting cards. This is your chance to have your creation transformed into a greeting card for special occasions.  The winners' submissions will be featured in an upcoming edition of FD News. Please send submissions to info@famdys.org
 

 
Noteworthy

Carrier screening for Jewish genetic diseases (JGDs) has been steadily increasing. Through the work of the Jewish Genetic Disease Consortium (www.jewishgeneticdiseases.org) and other organizations focused on JGDs, more people than ever are being screened for these diseases, which include FD and ten other diseases that affect the Ashkenazi Jewish population. About 20% of the people screened find out they are a carrier for one or more of the JGDs. With the increased rate in testing, awareness about JGDs is increasing, and “carrier” families are learning about how to avoid the risk of having a child with a JGD.

 
There is a new way to perform genetic testing using saliva instead of blood. This method opens the door for easier genetic screening. It is the hope that with the increased ease of the process, even more people will opt to be tested. If you or someone you know is of Ashkenazi (eastern European) Jewish descent, carrier screening is essential for family planning. Contact the Dysautonomia Foundation or the Jewish Genetic Disease Consortium for more information.

The First Annual Real Abilities: NY Disabilities Film Festival is taking place September 21st - 23rd. The festival promises to open discussion about living with disabilities and to celebrate the lives of people affected by such challenges; it is sponsored by the JCC and UJA. www.realabilities.org/
 
A new booklet outlines precautions that people with disabilities should take to prepare for an emergency situation. The Department of Aging, the Mayor’s Office for People with Disabilities and the Office of Emergency Management has published a brochure for seniors and people with disabilities. Such helpful tips include a list of what should be on hand in the event of a crisis and numbers to call for help. View a copy by going to:
http://home2.nyc.gov/html/oem/html/ready/seniors_guide.shtml
 

 
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.
 

 
Recent FD-Related Research Publications

Each of the following research publications includes at least one author who has been funded by the Dysautonomia Foundation.
 
Goldstein DS, Eldadah B, Sharabi Y, Axelrod FB.
Cardiac sympathetic hypo-innervation in familial dysautonomia. Clin Auton Res. 2008 Jun;18(3):115-9. Epub 2008 May 22.
 
David Cheishvili, Channa Maayan, Yoav Smith, Gil Ast and Aharon Razin
IKAP/hELP1 deficiency in the cerebrum of familial dysautonomia patients results in down regulation of genes involved in oligodendrocyte differentiation and in myelination.
Human Molecular Genetics, 2007, Vol. 16, No. 17 2097–2104