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

Highlights:

- Dysautonomia Center Update
- FD in the News
- Foundation Updates
- Caring Kids
- Portable Oxygen Concentrators
   on Airplanes
- Events and Fundraisers
- Upcoming Events
- Recent FD-Related Research
   Publications



Science FD Article

Science, one of the premier global science and research news publications, features an article about FD in the April 16th edition. In "Chasing a Disease to the Vanishing Point," familial dysautonomia is used as an example of a rare disease that could get caught between the benefits of genetic screening and the possibility that such screening could undermine the ability to raise funds and generate interest in FD.  more




New Novel Features
Character with FD

Lionel Shriver’s So Much For That explores the struggles of dealing with serious illnesses and the human cost of the health care system through a variety of characters suffering from or dealing with illness. It includes a subplot featuring a character named Flicka, who has FD, and the trials that she and her family experience while dealing with FD.   more



NEJM FD Article

The New England Journal of Medicine published a story about FD and genetic screening in their October 22, 2009 issue. The article considers the future for diseases whose populations continue to get smaller due to successful genetic screening programs.  more



Oxygen for Air Travel?
The process has changed

Many people with FD require supplemental oxygen when traveling by airplane. Some airlines used to rent oxygen canisters and help with all the arrangements.

Recent airline changes for procedures for in-flight oxygen have shifted the burden for all logistics to the passenger. These changes mean that passengers have to make arrangements themselves, but they also have more flexibility when making travel plans. 

We explain the changes and list some alternatives and strategies for air travel with oxygen. 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



Fall Events Raise Funds and Awareness for FD

6th Annual FD Cycle Tour


 The Sixth Annual "Tour de Foliage" FD Cycle Tour was held at Pace University on September 27th, 2009. Despite rain and cold temperatures, close to 100 registered riders helped raise over $150,000 in sponsorships. Special thanks to co-chairs Lisa Newman, Lisa Rudley and Melissa Slive.  more

Please join us for this year's Cycle Tour on  September 12th. more
 

Boat Festival


Our friends at The Old York Road Temple-Beth Am, located in Abington, PA, participated in the Philadelphia International Dragon Boat Festival on Saturday, October 3rd, 2009 to raise funds for the Dysautonomia Foundation.

Members of the congregation showed their support for the family of Rabbi Larry Sernovitz in the fight against FD as the “Hope United” team.  more




Holiday Office Party Fundraiser

The law firm of Mortenson and Pomeroy in Springfield, NJ did things a little differently at their holiday office party this past December. All office employees wrote down the name of their favorite charity, and one name was chosen from a hat.  All of the employees then made a donation to the selected charity.
 
We were thrilled to hear that the Dysautonomia Foundation was selected, and we received $460 from pooled donations among the generous employees. Special thanks to Karen Heller, friend of Elise Goldblat, for putting us in the running!
 


Upcoming Events

FD Day
June 6, 2010

Chicago Golf Outing
July 26, 2010

Long Island Golf Outing
August 2, 2010

7th Annual FD Cycle Tour
September 12, 2010
 

Dysautonomia Center Update

We are proud to be the only organization in the world that has established treatment and clinical research facilities for the benefit of people with FD. Our Dysautonomia Center at New York University and our FD Center at Hadassah Hospital in Jerusalem provide acute medical care, annual evaluations and consultative support services to FD patients throughout the world.  We’d like to share a few updates on the NYU Center.

- NIH grant for rare disorders study (more)
- New FD treatment therapies explored (more)
- Kinetin investigation resumes (more)
- New equipment helps deliver personalized
   medicine (more)
- New Faces at the Center (more)
- Visiting experts collaborate on FD studies (more)

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



From High School to “Real” World

Samantha Myers is featured in an article that describes her experience with a new program that takes an  innovative approach to the all too familiar problem facing children with disabilities as they transition out of high school.

Her mother, Faye Ginsburg, spearheaded an effort to establish improved transition services for Samantha and others like her. Samantha has benefited from an innovative program, Skills @ NYU, recently developed by her mother with the Cooke Center Academy and Winston Preparatory School, on the NYU campus.  more



FD Genetic Screening and
Awareness Event


 

Hannah Bress is a girl with a mission. She wants everyone to know about FD and the other Jewish genetic diseases, and she wants them to get genetic carrier screening so that they can avoid having a child with a devastating genetic disease.

Hannah's parents had a daughter, Jamie, who succumbed to FD before Hannah was born. For her mitzvah project, Hannah organized a genetic awareness and screening event at her synagogue.  more



5th Annual FD Bowl-a-thon

 

Thank you to Cory Sirota, Lexi Sirota and Ally Kaplan for their efforts as Event Coordinators of the 5th annual bowl-a-thon in Long Island, NY.

We are also grateful to the Sirota, Kaplan and Fass families for their hard work in making it a smooth, successful and fun time for all. This year’s donations totaled over $20,000, with over $12,000 raised by Scott Fass! more



Special Events
Fashion Show for FD
Music CD for FD
Makeover for FD


 

Samantha Kofsky organized a fashion show at her high school in honor of her brother, Mitchell, who has FD. All proceeds from the event go to FD treatment and research. more

 

Adam Millman, a talented young pianist, wrote original compositions and sold a CD of his music in honor of Jack Posnack, who has FD. To date, his CD has raised over $10,000! more

 

A Chanel makeover event at Bloomingdales in September raised $1,500 for FD. Organized by Robin Posnack & Mandi Bergenfeld, the event included fabulous makeovers and discounted beauty supplies.  more



Children's Book, Inspired by FD,
Shows the Brave Side of Disability


 

Lisa Eichlin's heartwarming story about friendship with a brave little boy was inspired by her childhood memories of Michael Crohn, who lived with FD from 1956 to 1999.

"The Bravest Boy I Ever Knew" is written in simple language and filled with beautiful illustrations. It is a wonderful story that will inspire children and adults to appreciate what's special about children who face challenges.  more



Caring Kids!

In addition to the FD Bowl-a-thon, CD for FD  and the projects run by Hannah Bress and Samantha Kofsky (mentioned above), many young people have recently made important contributions to the FD community for which we are extremely grateful and impressed! We hope other young adults are encouraged and inspired by their hard work and kindness.

Morgan Asinowski and Adrian Cheifetz-Broca each donated a portion of their Bar Mitzvah gifts to the Montreal Chapter of the Dysautonomia Foundation.

Sam Landau donated $2,500 of his Bar Mitzvah money to sponsor his father, Laurent, in the 6th Annual FD Cycle Tour. His sister, Bebe Landau, also raised money for her father’s ride by donating the proceeds from a lemonade stand.

Rebecca Newman brought smiles to children in the pediatrics wing at NYU Langone Medical Center when she gave away arts and craft supplies as part of her Bat Mitzvah project.

Jacob Stillman in honor of his brother Benjamin, asked for donations to be given to the Dysautonomia Foundation in lieu of gifts for his Bar Mitzvah.

Jonathan Vexler, following in the footsteps of his sister Caroline Vexler, asked for donations in honor of cousin Kyra Slive instead of Bar Mitzvah gifts. Together, Caroline and Jonathan have raised over $26,000!

Brooke Werner is going to be selling candy bars to raise money for FD research for her Mitzvah project, just as her older sister, Jenna Werner did a few years ago.
 
Jonathan Pezzner donated a portion of his Bar Mitzvah gifts in honor of his friend, Mitchell Kofsky.

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.

 


Recent FD-Related
Research Publications

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

Nurith Hiller, MD, Natalia Simanovsky, MD, Chaya Bahagon, MD, Naama Bogot, MD and Channa Maayan, MD.  Chest Computed Tomography Findings in Familial dysautonomia Patients: A Model for Aspiration. The Israel Medical Association Journal, 2009 Jul;11(7):393-7.
 
Gabrielle Gold-von Simson, MD, MS, Eleny Romanos-Sirakis, MD, Channa Maayan, MD, Felicia B. Axelrod, MD Neoplasia in Familial Dysautonomia: A 20-Year Review in a Young Patient Population. The Journal of Pediatrics, Volume 155, Issue 6, Pages 934-936 (December 2009)
 
Valensi-Kurtz M, Lefler S, Cohen MA, Aharonowiz M, Cohen-Kupiec R, Sheinin A, Ashery U, Reubinoff B, Weil M.  Enriched population of PNS neurons derived from human embryonic stem cells as a platform for studying peripheral neuropathies. PLoS One. 2010 Feb 18;5(2):e9290.

25th Anniversary
2010 International FD Day
Sunday, June 6th, 2010 10AM-3:30PM
Alumni Hall, NYU Langone Medical Center
550 First Avenue, NY, NY 10016

Please join us as we celebrate 25 years of bringing
families, researchers and doctors together.

For more information: www.famdys.org/fdday 
Register online: wwww.famdys.org/fdday/register

Our mailing address is: 315 W 39th St., #701 New York, NY 10018 
Find us on the web at: www.famdys.org
Email us at: info@famdys.org
Call us at: 212-279-1066
Facebook: www.facebook.com/famdys
Youtube: www.youtube.com/famdys
Twitter: www.twitter.com/famdys
Copyright (C) 2010 Dysautonomia Foundation, Inc. All rights reserved.

 Click here to unsubscribe. Please make sure the unsubscribe email is sent from the same account to which we sent this email. Click here to subscribe to our news emails. Please make sure the subscribe email is sent from the same account to which you want us to send newsletter and informational emails. We respect your privacy; we do not share email addresses with any third party.