Dysautonomia
Foundation, Inc.
A non-profit
organization supporting medical research
and treatment for people with Familial Dysautonomia
Familial Dysautonomia News
FD Psychology Research --
A doctoral student (Emily Sonenshein) is
conducting a research study on the psychological and social aspects of
living with familial dysautonomia. This study involves the researcher
asking family members open-ended interview questions in order to learn
about families’ experiences. The interviews will be conducted at the
family’s home. To participate, the family must live within approximately
150 miles of Philadelphia, Pennsylvania. In addition, the mother and the
father must both be willing to participate (the parents do not need to
be married), along with one unaffected child and a child with FD. The
children must be at least 13 years of age. If you are interested in
participating in this study, please contact Emily Sonenshein at
esonenshein@mail.widener.edu
(October 2007)
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"Tour de Foliage has grown from
humble roots"
is the title of an
article
published in the Lower Hudson Online website. The article, which
first appeared in The Journal News newspaper on October 3rd, describes
how the FD Tour de Foliage cycle tour has grown from a small event into
a huge fundraiser, and features an interview with Melissa Slive (mother
of Kyra Slive, who has FD) and Lisa Rudley. It was Lisa who came up with
the idea that her passion for cycling could be applied to fundraising
for FD.
(October 2007)
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"Mission Impossible: A Routine
Childhood"
is the title of an
article in the
September 30th edition of The New York Times, featuring Rebecca Newman,
a 10-year-old girl with FD who is the daughter of Lisa Newman, a member
of the Foundation's Board of Directors. The story details what it is
like behind the scenes raising a child with FD.
(October 2007)
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"A disease 'most people have never heard
of' hits home"
is the title of an
article in the
September 2nd edition of The Journal News, a newspaper serving the lower
Hudson Valley region of NY, including Westchester and Rockland counties.
The newspaper also published a short
video featuring several people with FD and their families. The article
includes interviews with several families as well as an overview of FD
and the foundation, and urges people at risk to get carrier screening
for FD and all Jewish genetic diseases.
Click here to read the
text of the article.
(September 2007)
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"What It Feels Like...to Not Feel Pain"
is the title of an
article in the August edition of Esquire magazine. Written by Perry
Goldberger, 17, the article describes one aspect of living with
FD. "You can imagine that I don't do much hammering," writes Goldberger,
as she explains what it's like to not feel pain.
Click here to read the
text of the article.
(August 2007)
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The 4th Annual Chicago FD Golf Classic,
organized by the Meyers family of Buffalo Grove, was held at
Hillcrest Country Club on July 23rd. Over 170 people turned out
for a fantastic day of golf and dinner. In just four years, this outing
has grown into a huge event, with great auction and raffle prizes.
(July 2007)
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The 11th Annual Long Island FD Golf
Classic (Jericho, NY) was held at
the Meadow Brook Club on Tuesday, June
19th. A great day of golfing was followed
up by dinner, an awards presentation, a raffle drawing and a combination
live/silent auction featuring over 100 prizes, including signed sports
memorabilia, trips to Florida and the Caribbean, gift certificates and
tickets to sporting events and Broadway plays. We are grateful to our
generous sponsors, 136 golfers, dedicated volunteers and event
organizers Paul Wexler, Steven Fass and Paul Sunderland for making this
the foundation's most successful golf outing ever.
(June 2007)
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International FD Day was held at
NYU Medical Center on Sunday, June 3rd. This year's
program was both
informative and entertaining. The morning session included an update
from the Dysautonomia Treatment and Evaluation Center, as well as short
presentations from seven FD researchers and physicians. In the
afternoon, the "lunch with the experts" session gave FD families a
chance to meet and talk with a dozen experts currently involved with FD
research or treatment. For children, the entertainment program included
an animal show, a balloon artist,
personalized photos, a show by Magic Al, and a special appearance by
Mick Foley (3-time
world wrestling champion). For FD adults, there was an informal dinner
after the event. Click here for
details of the event.
(June 2007)
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The 2nd Annual FD Bowl-a-thon was
held on Sunday, March 18th at Woodmere Bowling Lanes. It was a huge
success, raising over $40,000 for the Dysautonomia Foundation. Jared
Sirota, event chairperson, and the entire Sirota family did an
outstanding job in planning and conducting the event. The event was
packed to capacity, with 100 bowlers. There were dozens of great raffle
items, including a Nintendo Wii game system and an Apple Video IPod.
Special thanks to Scott Fass for raising over $20,000 in sponsorship
donations for this event.
Click here for
photos of the event.
(March 2007)
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Did you know that you can raise funds for
the Dysautonomia Foundation simply by searching the internet? Through
GoodSearch, a small contribution can be generated every time you
search on the web.
GoodSearch is a Yahoo-powered search engine with a unique social
mission. They give 50% of their advertising revenue to nonprofits and
schools. Go
to GoodSearch at www.goodsearch.com
and enter Familial Dysautonomia Foundation in the "Who do you GoodSearch for?" field.
(February 2007)
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The Dysautonomia Foundation was represented
by the renowned actress, Cynthia Nixon, at CIBC World Markets Miracle
Day on December 6th, 2006. Ms. Nixon spoke about FD and the Dysautonomia
Foundation at the event. The Foundation is extremely grateful to Ms.
Nixon for taking the time to represent us and to spread the word about
FD.
Click here for photos and more
information.
(December 2006)
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The Familial Dysautonomia Home and
Community-Based Services Waiver was recently passed through Florida
legislation. This legislation entitles all FD patients residing in the
state of Florida, regardless of age or family income, to receive a
multitude of medically necessary services that allow for improved
quality of life.
Click here for more information.
(December 2006)
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CNN's website
features a story about children who cannot feel pain. The story, "World
without pain is hell, parent says" includes interviews with Dr.
Felicia Axelrod and Laurie Goldberger, parent of a child with FD.
Click here to read the story on CNN's website.
(October 2006)
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The July 2006 edition of a prestigious medical journal, Current
Problems in Pediatric and Adolescent Health Care, contains a
lengthy article on FD written by Dr. Gabrielle Gold-von Simson and Dr.
Felicia B. Axelrod of the NYU Dysautonomia Treatment and Evaluation
Center. The article, Familial Dysautonomia: Update and Recent
Advances, is highlighted in the Foreword of the journal by the associate editor, Arthur H. Fierman, MD. Dr. Fierman comments:
"One would think that a disorder with such a low prevalence would be pretty "low on the totem pole" when it comes to resources for advocacy and scientific discovery. However, . . . a foundation was established for advocacy in 1951 . . . Within a 50-year time span, supportive treatments for FD have been developed and refined, long-term survival has increased, . . . and the gene for FD has been located"
"After reading this month's issue, I think you will agree that familial dysautonomia is a very pertinent example of the advances in understanding, treatment, and advocacy that are possible even for rare disorders that may not draw much public attention."
Current
Problems in Pediatric and Adolescent Health Care Volume 36 - Number
6 (July 2006)
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PubMed listing for
recent publications that
reference Familial Dysautonomia.
(August 2006)
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Dysautonomia Foundation, Inc.
315 West 39th Street, Suite
701
New York, NY 10018
Phone: 212-279-1066
Email: info@familialdysautonomia.org
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