FD News
December 2010
Familial Dysautonomia Community News
Inside this edition of FD News

Highlights:

- New FD Research
- A Tribute to Dr. Axelrod
- FD in the News
- New Philadelphia Chapter
- Caring Kids
- Walk For FD
- Events and Fundraisers
- FD Day
- Meet Tully Zygier
- Upcoming Events
- Recent FD-Related Research
   Publications



A New Chapter

On January 1st 2011, the Philadelphia Chapter of the Dysautonomia Foundation will start formal operations. Formed by Rabbi Larry Sernovitz and Cindy Singer, the Chapter's first fundraising event will be a cycle tour and walkathon on April 10th 2011.

Many members of the chapter are experienced with FD fund-raising, having already put together a fantastic event for the Philadelphia Dragon Boat Festival in September of 2009. We welcome them and hope that our readers will turn out for what promises to be a fantastic event in the spring. Visit our web site in January for details on the event.



Walk for FD

On Sunday, November 14th, the Dysautonomia Foundation was the beneficiary of an amazing event organized by college students from the NYC area.  Shalhevet at NYU, Hillel at NYU, AEPi at NYU, AEPhi at NYU, Chabad at NYU, Stern College for Women TAC, and Columbia University Yavneh held a seven-mile walk along the Hudson River to raise money for FD treatment and research.

  

The group raised $25,000, and the 100+ walkers, most wearing distinctive blue FD sweatshirts, were an inspirational sight walking through the streets of NYC and along the Hudson River. Special thanks to Sarah Strongin and Shira Falk of Shalhevet at NYU for their amazing talents in organizing this event.   more



Annual Journal

The 2010 Journal Campaign is underway. It's a great way to honor someone special, celebrate a recent success or remember a loved one. Now with color pages,  the Journal is a great way to show you care and contribute to FD research and treatment.

      
The 2009 Journal was a great success. Be a part of the 2010 edition, and show your support for the FD community.

Visit our web site to see sample pages and to obtain the Journal submission form.  more



4th Annual Blue Genes

On Sunday, October 17th, 300 people gathered at Chelsea Piers in New York City to raise money for FD treatment and research.

  

Guests were treated to cocktails, dinner, a fashion show featuring kids with FD and their siblings, silent and live auctions and a touching tribute to Dr. Axelrod’s unparalleled 40 years of service to the FD community.

The event raised $200,000 for the Dysautonomia Foundation. Many thanks to co-chairs Robin Fiddle Posnack and Mandi Fiddle Bergenfeld, as well as to the event committee and to all the volunteers, donors and sponsors who made the event so memorable.  more



7th Annual FD Cycle Tour


  

On Sunday, September 12th, over 100 riders participated in the Dysautonomia Foundation’s 7th Annual FD Cycle Tour at Pace University in Pleasantville, NY. Event co-chairs Melissa Slive, Lisa Rudley and Lisa & Jeff Newman  organized another successful fundraiser that raised over $180,000 for FD treatment and research.

The FD Cycle Tour continues to gain a reputation in Westchester County, NY as one of the most well-run and enjoyable cycle rides in the area. With 25 and 50-mile rides, as well as fun events for kids, everyone who attends has a great time. Ride for a Cure! pictures

 


14th Annual FD Golf Classic (NY)


 

In August, the 14th Annual FD Golf Classic took place at The Creek, a fabulous club with a golf course and beach house on the Long Island Sound.

Co-chairman Paul Wexler conducted the live auction, and helped us raise over $200,000. Our longest-running fundraiser continues to attract over 125 generous golfers each year. The event includes a breakfast buffet, 18-holes of golf, cocktails, dinner, silent and live auctions and dozens of fantastic raffle prizes.   more

7th Annual Chicago
FD Golf Classic

On Monday, July 26th, the 7th Annual FD Golf Classic took place at the Briarwood Country Club in Deerfield, Illinois.

 

The event raised $75,000 for FD research and treatment, and was once again  organized by Gregg Meyers and his family in honor of their daughter Sophie, who has FD. Everyone who attended the golf outing and the dinner afterward had a wonderful time. Check our web site in January for next year's date.


Ladies of Mountain Ridge Country Club Help FD

Carol Billow, grandmother of Ben Rainer (who has FD), inspired the members of the Mountain Ridge Country Club in New Jersey to select the Dysautonomia Foundation as the charity of choice for their Ladies Luncheon.

On June 3rd the ladies came together to hear about FD and the need for carrier screening for all genetic diseases. They donated over $6,000 to the Dysautonomia Foundation and resolved to spread the word about carrier testing throughout their community. Carol's efforts to increase awareness and raise funds demonstrate how one family can make a difference in an entire community. We are truly grateful to all the ladies from Mountain Ridge Country Club.
 

Landmark Publication Unravels
One of the Great Mysteries of FD:
Blood Pressure Control

Researchers at the NYU Dysautonomia Research Lab have identified the mechanism responsible for one of the most troublesome symptoms of FD. In the largest study ever conducted on people with FD, the researchers explored the function of the nerve pathways that control blood pressure. Their results, recently published in the journal Neurology, are surprising, and will lead to better treatments and new directions for FD research.

"We now know that the problem with FD is that while the nerves that carry the signals from the brain to control the different organs do work pretty well, the nerves that carry information from the body organs to the brain do not work properly," says  Horacio Kaufmann, MD, Director of the FD Research Laboratory at NYU.  

The study, described in the article Afferent baroreflex failure in familial dysautonomia, by Lucy Norcliffe-Kaufmann, PhD, Felicia Axelrod, MD, and Horacio Kaufmann, MD has already begun to shape new treatment protocols for FD patients, and it lays the foundation for new research aimed at reducing or eliminating the dreaded "autonomic crises" that plague many FD patients.    more

Visit our news page or follow us on facebook for the latest updates on FD treatment and research.



A Special Tribute to
Dr. Felicia B. Axelrod

At our October Blue Genes event, Dr. Axelrod was honored for 40 years of unparalleled medical care and dedication to the FD community. The evening included wonderful testi-monials from Dr. Susan Slaugenhaupt, Dr. Stuart Ditchek and members of Dr. Axelrod's family, along with a special video  tribute from FD families.

This remarkable woman, who has shaped the history of FD treatment and research for decades, shows no signs of slowing down. Visit our web site for an article on her amazing story, for a look at the video tribute and for pictures from the event.  more



25th Annual FD Day Conference

 

Thanks to all who attended the 2010 FD Day Conference on June 6th and helped make it a success. It was the 25th Anniversary of FD Day, and with over 200 registered attendees and over 20 panelists, presenters and experts, it was one of our best FD Days ever!

Featured scientific and medical presentations were given by Horacio Kaufmann, MD, Gil Ast, PhD, Channa Maayan, MD, and Felicia B. Axelrod, MD. One of the high points of the day was a panel of FD adults that was led by Dr. Axelrod. It included six very impressive individuals talking about their life experiences, their challenges, their families and their accomplishments. At the end of the morning proceedings, Foundation President Eddie Baranoff presented Dr. Axelrod with a plaque honoring her for 40 years of service to the FD community.



For the afternoon activity, the parents split up into four groups and got a chance to have in-depth discussions with groups of experts that rotated through each of the parent groups. The experts were divided into four specialties: genetics & research, adult care, pediatrics, and social services & legal issues. The last specialty group, a new feature, dealt with everything from estate planning to school district litigation to assisted living, and it proved to be very popular with the families. Next year's FD Day is scheduled for June 12, 2011. photos       abstracts & experts



FD in the News


Sernovitz Family in The Forward

 

Rabbi Larry Sernovitz and wife Rebecca Sernovitz of Abington, PA joined the push to urge rabbis to promote carrier screening after their son Sam was born with FD in September of 2008.

Rabbi Sernovitz had never heard the term “Jewish genetic disease” as a rabbinic student, and in the article he notes that, “as far as rabbinic education goes, there is not nearly enough taught about Jewish genetic diseases.” Now Sernovitz and others are working to change that.  article 


Newman Family in The Rye Patch

 

Lisa and Jeff Newman, co-chairs of the annual FD Cycle Tour, were inter-viewed in August to talk about their experience as parents of a child with FD, as well as how others can help by participating in the bike ride. 

The Rye Patch, an online news web site, also featured a video report from the event. The Westchester, NY cycle tour, now in it's 7th year, was also co-chaired by Melissa Slive and Lisa Rudley.  article  video


More FD News

The New City Patch, another online news web site, featured an interview with David Brenner, Dysautonomia Foundation Executive Director. The interview helped publicize the FD cycle tour and raise awareness for FD carrier screening.  "The most important thing people can do is get screened," Brenner said, adding that a simple blood or saliva test can identify carriers of the FD the gene.  article

 

An interview with Dr. Axelrod and David Brenner was featured on Bob Salter's WFAN radio show in New York City.  The interview focused on FD awareness, the work done by the Dysautonomia Foundation, and the 4th Annual Blue Genes fundraiser. more

The Jewish Star highlighted the amazing efforts of college students who organized the Walk for FD and the need for the Jewish community to be more aware of FD.  more



Meet Tully Zygier:
An FD Success Story


 

For Tully Zygier, a 30-year old with FD, having a disability does not stand in the way of reaching her goals. “It’s so easy to give up and just stay at home, but to be able to push yourself and achieve your goals, it does much for your self-esteem,” believes Tully.

Tully, who lives in Australia and is a college graduate and a social worker, doesn't let anything stand in her way. She visited the US in the spring and was one of the panelists at our FD Day conference.   more



Keep Up with Foundation News

Follow us on Facebook, Twitter and YouTube for all the latest news, announcements and videos from the Dysautonomia Foundation.

www.facebook.com/famdys


www.twitter.com/famdys


www.youtube.com/famdys


Caring Kids!

Danielle Kline of Huntingdon Valley, PA and her family organized a dance party fundraiser for FD at the Old York Road Temple - Beth Am on May 23rd. The event included live music, a raffle and FD awareness speeches. This was Danielle’s Bat Mitzvah project, and her extraordinary efforts helped raise $1,200 for the Dysautonomia Foundation. We are so grateful for her hard work!

The seventh graders at Temple Shalom Religious School in Greenwich, CT chose the Dysautonomia Foundation as the charity recipient of the students’ tzedakah (righteous giving) campaign for 2009-2010. The selection was inspired by 13-year old Rebecca Newman, who has FD, and who also happens to be a friend of one of the students in the program. After much discussion and learning about the disorder, the students chose FD and the Dysautonomia Foundation. We commend them on their generosity and caring!

Please contact us if you know of a young person whose efforts on behalf of FD should be mentioned here, or if you want our assistance in arranging a project for your child.


Upcoming Events


2011 FD Bowl-a-thon
March 20th 2011

Philadelphia Chapter Cycle Tour
April 10th 2011

FD Day
June 12, 2011



Recent FD-Related
Research Publications

Each of the research teams below includes at least one researcher who is currently funded by the Dysautonomia Foundation.

Afferent baroreflex failure in familial dysautonomia. Norcliffe-Kaufmann L, Axelrod F, Kaufmann H. Neurology. 2010 Nov 23;75(21):1904-11.

Complicated Peptic Ulcer Disease in Three Patients With Familial Dysautonomia. Wan DW, Levy J, Ginsburg HB, Kaufmann H, Axelrod FB. J Clin Gastroenterol. 2010 Oct 6. [Epub ahead of print]

IKAP/hELP1 downregulation in neuroblastoma cells causes enhanced cell adhesion mediated by contactin overexpression. Cohen-Kupiec R, Weinstein S, Kantor G, Peer D, Weil M. Cell Adh Migr. 2010 Oct 8;4(4). [Epub ahead of print]

Renal transplantation in familial dysautonomia: report of two cases and review of the literature. Rekhtman Y, Bomback AS, Nash MA, Cohen SD, Matalon A, Jan DM, Kaufmann H, Axelrod FB, Radhakrishnan J, Appel GB. Clin J Am Soc Nephrol. 2010 Sep;5(9):1676-80. Epub 2010 Jun 17.

2011 International FD Day
Sunday, June 12th, 2011 10AM-3:30PM
Alumni Hall, NYU Langone Medical Center
550 First Avenue, NY, NY 10016

 

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