September 2009 News

Latest information on news, events and items of interest for the familial dysautonomia (FD) community.

In this Issue:
  • New FD Treatment Manual
  • FD Tear "Live and Let Live" Bracelets:
    On Sale Now!
  • 24th Annual FD Day: Recap
  • Dysautonomia Center Personnel Changes
  • Upcoming Events: Cycle Tour, Dragon Boat Festival
  • Recent Events: Blue Genes, Golf Outings, Bowling
  • Foundation Updates: Facebook, Twitter, Grants, Chapters
  • Kids of Courage: Fantastic Adventures
  • FD in the News: Forward Articles, FD Family Gets a Home Makeover, FD Mom Inspires Others
  • Recent FD-Related Research Publications
Upcoming Events
  • 6th Annual FD Cycle Tour - September 27, 2009
  • Philadelphia Dragon Boat Festival - October 3, 2009
  • 2009 Journal Campaign - October 15, 2009
  • 25th International FD Day - June 6, 2010
  • 14th Annual FD Golf Classic - June 22, 2010

 

 
New FD Manual
 
The 2009 edition of the FD Manual of Comprehensive Care has been published and recently distributed to FD families. While this reference is not intended to be a substitute for advice from a qualified medical professional, it does provide a wide range of extremely useful information about all aspects of caring for a person with FD. Prepared by our medical and research staff at the NYU Dysautonomia Center, it is the only resource of its kind.
 
The manual deals with all aspects of day-to-day life for people with FD. It can be used as a guide for understanding the many challenges presented by FD, and can be extremely useful when shared with therapists, nurses and doctors who may not be familiar with all aspects of FD.

All FD families in the US should have received a copy in August, and families living outside of the US should receive their copies in September. If you have not received your copy, or if you need additional copies, please contact the Dysautonomia Foundation to make arrangements. Supply is limited and demand has been substantial, so some requests may not be fulfilled until a second printing is completed.






FD Bracelets
 
FD Tear "Live and Let Live" bracelets are on sale now!

Beautifully designed, available in gold or silver, these bracelets make great gifts and help raise funds for FD research and treatment. The Dysautonomia Foundation introduced the beautiful FD Tear “Live and Let Live” bracelets at FD Day this year.

Designed by Catherine M. Zadeh exclusively for the Foundation, you can choose either a silver ($100) or gold design ($375). The bracelets are a beautiful way to show your support for the FD community.
 
Order bracelets at www.famdys.org/bracelets/ or send us a check, and they will be shipped to you within 10 days. (While supplies last.) There is a $15 fee for shipping 1 - 5 bracelets. For orders of more than 5 bracelets, there is a $30 fee for shipping and handling.
 




 
FD Day 2009
 
The 24th annual FD Day conference took place on June 14, 2009. 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 Mouse Models and an introduction to Kids of Courage—a new travel and summer camp opportunity for people with FD. (See story below) A list of speakers and abstracts of the presentations can be found at www.famdys.org/FD-Day-2009
 
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.
 
For entertainment, there was a balloon artist, magician, a photo favors booth, airbrush t-shirt booth, movies and casino room to entertain children and young adults. New this year were all kosher continental breakfast and lunch buffets. Photos from the day’s activities can be found at www.famdys.org/FD-Day-2009





Presentations included:
Felicia Axelrod, MD
Horacio Kaufmann, MD
Susan Slaugenhaupt, PhD
Stuart Ditchek, MD


Expert panels included:
Felicia B. Axelrod, MD
Dena Berlin, PNP, RN
Stuart Ditchek, MD
Philip Giarraffa, MSW
Horacio Kaufmann, MD
Joseph Levy, MD
Channa Maayan, MD
Albert Matalon, MD
Susan A. Slaugenhaupt, PhD

The 25th International FD Day will be held on June 6, 2010

Dysautonomia Center Personnel Changes
 
Nurse Practitioner Dena Berlin Leaves the Dysautonomia Center
After working with Dr. Axelrod at the Dysautonomia Center for 16 years, Dena Berlin has left for a position with Dr. Joseph Levy in NYU’s Division of Pediatric Gastroenterology. It's hard to imagine the Center without Dena, who has always been a dear friend to everyone who came to the Center.  We are grateful for her dedication and years of patient care. We will miss her and wish her the best of luck in her new role.
 
 
New Nurse Practitioner Joseph Reyes Joins the Dysautonomia Center
We warmly welcome Joseph Reyes as the new Pediatric Nurse Practitioner in the Dysautonomia Center. Joseph has a Bachelor of Science degree in Nursing from the University of Pennsylvania and was awarded a Masters in Science after completing training in the highly competitive Pediatric Nurse Practitioner program at NYU Medical Center. Joseph has worked as a Senior Nurse Clinician and has gained expertise in acute management of children and adolescents with FD. We look forward to his full-time commitment to the FD community! Please join us in welcoming Joseph to the Dysautonomia Center.


Dr. Alejandra Gonzalez-Duarte Completes Autonomic Disorders Fellowship
We congratulate Dr. Alejandra Gonzalez-Duarte on the completion of her fellowship year at the Dysautonomia Center, and we are pleased that she will be staying on as a staff member. She will continue working on her research projects and will participate in patient care.


Dr. Ishan Adhikari Starts Autonomic Disorders Fellowship
We also welcome Dr. Ishan Adhikari, who is beginning his year as our new Autonomic Disorders Fellow at the NYU Dysautonomia Center. Ishan comes to us from Baylor College of Medicine in Houston where he was an integral member of a dynamic autonomic laboratory. He looks forward to this year and is anxious to meet and work with the FD patients and their families.


Dr. Gabrielle Gold-von Simson Leaves the Dysautonomia Center
After 7 years as part of the medical staff at the Center, Gabrielle has moved on to a position as a member of the NYU Faculty Group Practice Inpatient Hospital Program. For many of the younger patients and their families, Gabrielle has played an important role as a friendly, warm and resourceful member of the treatment staff. We will miss her and wish her the best of luck in her new role.
 
















Upcoming Events
Cycle Tour
The Sixth Annual FD Cycle Tour will be held on September 27th at Pace University in Pleasantville, NY. With 25-mile and 50-mile routes, raffle prizes and collector’s edition FD cycle jerseys, this event gives riders a chance to enjoy the Northeast’s finest fall foliage while enjoying a great ride through Westchester County, NY. If you are not riding, you can still do your part! Sponsor the event, sponsor a rider or volunteer on the day of the event. We look forward to seeing you there! Visit www.fdcycletour.org for full details.

Dragon Boat Festival
The Old York Road Temple Beth Am Community, located in Abington, Pennsylvania, is participating in the Philadelphia International Dragon Boat Festival on Saturday, October 3rd, 2009 to raise funds for the Dysautonomia Foundation. This all day event will be held on Philadelphia’s scenic Schuylkill River and attracts thousands of visitors each year.
 
Members of the congregation will support the family of Rabbi Sernovitz in the fight against FD as the “Hope United” team. For more information see www.famdys.org/dragon

 
 
 
 
Recent Events
Thank you to everyone who participated in and supported our Blue Genes event, our bowl-a-thon and our two golf outings this year. You helped to raise vital funds for FD treatment and research!

Blue Genes
On April 26, 2009, our annual Blue Genes fundraiser took place at SLATE in Manhattan. The event included a cocktail reception, fashion show featuring FD kids and young adults, as well as fantastic silent and live auctions.
 
Co-chaired by sisters Mandi Fiddle Bergenfeld and Robin Fiddle Posnack, it was an outstanding effort put forth by everyone involved, including the event committee members and dozens of volunteers. The silent auction featured a wide variety of great items and the live auction included fabulous trips, tours and a “Raise Your Paddle” contribution for the Dysautonomia Center fellowship. We thank everyone who attended, sponsored, donated, and volunteered. Our next Blue Genes event is scheduled for 2010.


 
Bowl-a-Thon Strikes a Blow Against FD
 
On Sunday, March 22nd, the 4th Annual Long Island Bowl-a-Thon took place at Woodmere Lanes in Woodmere, New York. Cori Sirota and Amanda Oppenheim organized the event, and 100 bowlers participated to raise funds through raffle sales and sponsorships while having fun!

13th Annual FD Golf Classic in New York
 
Tuesday, June 23rd marked the 13th Annual FD Golf Classic at Meadow Brook Club in Jericho, NY. 130 golfers gathered in Long Island for a beautiful day of the green for a good cause. Paul Wexler, Steve Fass and Paul Sunderland co-chaired the all-day event once again this year, which included brunch, 18 holes of golf, dinner, cocktails and an auction and raffle with fabulous prizes. Golfers were able to electronically keep their scores with eGolfScore on the course, while friends and family could track their progress live over the internet.
 
6th Annual FD Golf Classic in Chicago
 
In Long Grove, Illinois, 75 golfers attended the highly successful Sixth Annual FD Golf Classic on August 3rd at Hillcrest Country Club. They were joined by dozens more FD supporters for dinner and an auction in the evening. Since its inception in 2004, Gregg Meyers has done a fantastic job of organizing this annual event, which has become our most successful fundraiser outside of the NY metropolitan area.


Click pictures for more photos









 
Foundation Updates

Dysautonomia Foundation on Facebook and Twitter
 

Keep updated with the latest FD news and fundraising events on our Facebook and Twitter.  Be sure to check out our Facebook fan page and become a fan of the Foundation! Also, you can now follow us on Twitter. Please encourage your friends to show their support as well. 

Government Grants

The Dysautonomia Foundation was recently awarded grants from the State of New York and the City of New York to support the operation of the Dysautonomia Center at NYU. Special thanks to Assembly Members Mayersohn and Pheffer, Assembly Speaker Silver, State Senator Stavisky, Senate Leader Smith, and City Council Member Weprin. Look for details of these grants and other government support in our next edition of DysCourse.

Chapter News

We are extremely grateful to all of our Chapters for their generous support of the Foundation. Recent contributions include $6,000 from South Florida, $23,000 from Chicago, $14,500 from Southern California, and $26,000 from Toronto.







Click to see our fan page




Click to see our twitter page





At South Florida Chapter Luncheon
(L-R):  Nora Blake, David Brenner, Doris Eisner, Hortense Feldman, Beth Grossman, Shirley Rubenstein
Seated: Fay Lager

 
FD in the News

Kids of Courage

Kids of Courage, an incredible all-volunteer organization that operates programs for special kids and young adults (no parents allowed!), recently sponsored trips to Los Angeles (Disney, SeaWorld and Universal Studios) and to Orlando (Disney, SeaWorld, Universal Studios). With complete medical facilities and staff, it is the only program of its kind that can provide a safe, loving environment for people with FD. Founded by Dr. Stuart Ditchek, Ari Adlerstein and Howie Kafka, and staffed with hundreds of volunteers, Kids of Courage is now discussing the possibility of partnering with the Dysautonomia Foundation for a trip to Israel in 2010. Visit their web site, www.kidsoc.org,  for recent TV news clips (featuring several FD kids) and stories in the press about this wonderful organization.

Newspaper Features FD

The Forward newspaper's August 28th Genetics section published two stories featuring the Dysautonomia Foundation. On the front page of the section, a story ran featuring the incredible accomplishments of Dr. Felicia Axelrod. Also, in an in-depth look at the controversy surrounding gene patents, they single out the Dysautonomia Foundation as an organization that has set an example of the best way to use a gene patent for the benefit of patients and researchers.

FD Family Gets a Home Makeover

The Eshet family from Newton, Massachusetts were recently featured in a heartwarming story in both the Wicked Local Newton and The Jewish Advocate. The stories described how Avigail Eshet (8), and her parents Dani and Sigal, received a wonderful donation from their community when several local businesses volunteered to create and fund a new space for Avigail in the Eshet home. Construction of Avigail’s new room began in February, and the volunteers hope that it will help to eliminate factors that ignite crisis or lead to accidents. Improvements include a play, learning and therapy area, a handicapped bathroom, an observation area for a nurse, and an electrical grid and reinforced ceiling to accommodate a chair lift as Avigail grows. We wish the Eshets all the best with their gift!   Wicked Local Newton article is available here.

Full-Time Commitment, Part-Time Career: A Friend's Inspiration

An inspiring story about Lisa Newman, who gave up a promising full-time career to devote her time to the care of her family, especially her daughter, Rebecca, who has FD. The story, which appears online at the web site CurrentMom, is available here.



























Recent FD-Related Research Publications


Modelling pathogenesis and treatment of familial dysautonomia using patient-specific iPSCs. Nature, 2009 Aug 19
Lee G, Papapetrou EP, Kim H, Chambers SM, Tomishima MJ, Fasano CA, Ganat YM, Menon J, Shimizu F, Viale A, Tabar V, Sadelain M, Studer L.


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