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FD Day 2008
The 23rd Annual
International FD Day conference will be held at NYU Medical
Center on June 1st. Families, doctors and researchers are
invited to listen to presentations and speak to experts about
FD-related developments in treatment, research and lifestyle.
Horacio Kaufmann, MD,
the newest member of the NYU Dysautonomia Center team, will be
one of the featured speakers. Along with Dr. Kaufmann, Felicia
B. Axelrod, MD, Susan Slaugenhaupt, PhD, and Gabrielle Gold-von
Simson, MD, will be presenting updates on topics including
patient care, clinical research, FD mouse model, and the use of
kinetin in the treatment of FD.
In the afternoon, the
presenters will be joined by FD experts David Feldman, MD,
Albert Matalon, MD, Channa Maayan, MD, and Mark Sloane, MD, to
meet with families in small groups for interactive discussions
on the topics of supportive care, clinical research and genetic
research.
During the day, there
will be a wide variety of
activities for children, teens and young adults that will include a
balloon artist, an animal show, a magician, photo session, games, crafts, and airbrush t-shirts.
For FD adults, there will be a casino room and
dinner at a local restaurant.
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Please join us
for FD Day
Let us know how many are in your group:
email:
info@famdys.org
call:
212-279-1066
fax:
212-270-2066
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FD Families in
the News
The family of Rebecca Newman was featured in an
article in the
Franklin & Marshall College school magazine. The article focuses on "Ordinary
Families, Extraordinary Lives"
The family of Peter Sonenshein was
featured in an
article in the online publication MainLineLife.com. The
article, entitled "A difficult diagnosis," focuses on familial
dysautonomia and other Jewish genetic diseases discussed at a
recent symposium.
The family of Michael Brenner was featured in an
article in the Journal News
about genetic screening for Jewish genetic diseases. The
article, entitled "Families See Hope in Gene Tests," urges the
at-risk population to get tested for all Jewish genetic
diseases.
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Do you know of
an article that reports on news related to FD?
Please let us
know so we can share it with the
FD community.
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Upcoming Events
Bowl-a-thon
May 18 --
Join us or sponsor a bowler in our
annual Long Island bowl-a-thon in Woodmere, NY. Great raffle
prizes!
FD Day
June 1 -- At NYU Medical Center. Program begins at
10 AM.
Long Island
Golf Outing June 17
-- Meadow Brook Club in
Jericho, NY.
Chicago
Golf Outing July 28 --
Hillcrest Country Club, Long
Grove, IL
Cycle Tour October 12--
The 5th Annual Tour de Foliage features 25 & 50 mile routes through scenic towns of Westchester County.
Register to ride, sponsor a rider, sponsor the event, or
volunteer to help with the event.
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We need your help!
Volunteer to help at one of our events.
Please contact us at
info@famdys.org or
(212) 279-1066
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Government Grant Support
Thanks to the efforts of the NYS Assembly majority, and
especially due to the efforts of Assemblywoman Nettie Mayersohn,
Assemblywoman Audrey Pheffer, and Assembly Speaker Sheldon
Silver, the latest NYS budget includes an appropriation of
$50,000 for the Dysautonomia Foundation.
The funding from the state of New York will be
used to help support the NYU Dysautonomia Center. The Foundation
is pursuing grant opportunities from
federal, state, and local government sources, as well as from
corporate and private sources. Over the last two years,
substantial grants have been received from CIBC World Markets
and the Dorothy B. Hersh Foundation.
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Do you know of a public or private
grant program we should pursue?>
Please contact the Foundation office and let us know.
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Noteworthy News & Events
GINA (Genetic Information
Nondiscrimination Act) protects people from discrimination based on
genetic traits. Bills have passed in both the House and Senate,
and GINA now awaits the signature of the President to become
law. With this legislation, individuals who are carriers for a genetic
disorder cannot be discriminated against by employers or
insurers. The
Genetic Alliance, of which the Dysautonomia Foundation is a
member, was one of the groups spearheading the push for
this legislation.
The Jewish Genetic Disease Consortium (JGDC) educates the Jewish Community and the medical community
about the need for carrier screening for Jewish genetic
diseases. The JGDC provides public education, conducts grand rounds programs at hospitals
and also helps to facilitate free and subsidized
genetic screening for the at-risk population.
The Dysautonomia
Foundation is a founding member of the
JGDC.
Do you know someone with FD who is an artist? VSA arts invites entries
from young artists with disabilities (ages 16 - 25) for the
Green Light Awards The program will award one Grand Prize of $20,000, one First
Award of $10,000, one Second Award of $6,000, and twelve Awards
of Excellence of $2,000 each.
Paintings, drawings, prints, photography, films and sculpture
can be submitted.
The
Sprout
Film Festival showcases works by and about people with disabilities.
People with developmental disabilities as subjects and
performers remain marginalized in film and television. This
festival,
at the Metropolitan Museum of Art on May 9 -11, aims to raise
their profile.
The film
Including Samuel
examines the educational and social inclusion of youth
with disabilities as a civil rights issue.
Screenings are being held around the country.
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Send a
Foundation
Tribute Card in honor or
in memory
of someone
special.
Visit our
website or contact us by mail.
We'll send a tribute card or a sympathy card with your personal message.
Artists, we need your help!
We need upbeat, colorful artwork for the covers of a
new set of FD greeting cards. Send submissions to
info@famdys.org
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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.
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Suggestions? Comments?
We welcome your advice.
Please contact us at
info@famdys.org or
(212) 279-1066 |
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Recent FD-Related Research Publications
Each of the the following research publications includes at
least one author who has, at some point in his or her career,
been funded by and/or participated in conferences sponsored by
the Dysautonomia Foundation.
Weese-Mayer DE, Kenny AS, Bennett HL, Ramirez JM, Leurgans SE.
Familial dysautonomia: Frequent, prolonged and severe hypoxemia
during wakefulness and sleep.
Pediatr Pulmonol.
2008 Jun;43(6):624-625
Chariot
A, Creppe C, Cornez I, Chariot MA.
In Process Citation
(IKAP - Elongator) Bull Mem Acad R Med Belg.
2007;162(5-6):315-22
Goldstein
DS, Holmes C, Axelrod FB.
Plasma Catechols in Familial Dysautonomia: A Long-term Follow-up
Study.
Neurochem Res. 2008 Mar 21
Johansen LD, Naumanen T, Knudsen A, Westerlund N, Gromova I,
Junttila M, Nielsen C, Bøttzauw T, Tolkovsky A, Westermarck J,
Coffey ET, Jäättelä M, Kallunki T.
IKAP localizes to membrane ruffles with filamin A and regulates
actin cytoskeleton organization and cell migration.
J Cell
Sci. 2008 Mar 15;121(Pt 6):854-64. Epub 2008 Feb 26.
Gold-von Simson G, Leyne M, Mull J, Rolnitzky LM, Goldberg JD,
Berlin D, Axelrod FB, Slaugenhaupt SA.
IKBKAP mRNA in peripheral blood leukocytes: a molecular marker
of gene expression and splicing in familial dysautonomia.
Pediatr Res. 2008
Feb;63(2):186-90.
Axelrod FB, Gold-von Simson G.
Hereditary sensory and autonomic neuropathies: types II, III,
and IV.
Orphanet J Rare
Dis. 2007 Oct 3;2:39.
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FD Research Conferences
Approximately every two years, the foundation sponsors a
conference for researchers to discuss current projects
and future directions for studies related to FD.
The next research conference is being planned for
September 2008.
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