Familial Dysautonomia Village Newsletter:
Familial dysautonomia –FD Village
www.fdvillage.org
Vol. 1, No. 1
June 25, 2000


Table of contents:
1. What's New at FD Village
2. Exciting Updates
3. Notes from FD Day
4. Pesticides and FD
5. Advocacy: NY State Bill #10978 on familial dysautonomia
6. Addendum




1. WHAT'S NEW AT FD VILLAGE:

The goal for FDVillage is to raise awareness of FD, catalogue
resources, and encourage research that will help those with FD and
their families. In the short time that FD Village has been up, we
have been viewed by over 600 visitors. We are proud to announce
that FD Village was recently awarded the Facing Challenges Award (see
Facing Challenge Award Page).
Updates to the site are being made constantly, so please visit
us often. One of our most exciting updates is that FDVillage has
gone multilingual. Go to our home page to see how you can instantly
translate the site into French, Spanish, German, Italian, or
Portuguese.
It is our hope that FD Village continues to provide information
and support to all those who care about FD. For topics you would
like to see addressed, for resources you would like to add (links,
book reviews, etc) please write FDVillage at Contact FD Village.
Please remember that we can only be as good as our collective
efforts.
....Also, thanks so much to the readers that have posted such kind
words.



2. EXCITING UPDATES:

We are excited that our outreach efforts have been met with
great interest and enthusiasm by the medical and research community.
Familial dysautonomia is recognized as a disorder that is easier to
study given that the population is so similar and that a common
mutation is responsible for the FD symptoms. The medical and
research community see this as an opportunity to gain information
that would not only help those with FD, but those in the general
population that suffer from similar symptoms or overlapping
disorders. Various specialties are responding, and our hope is that
each specialty can give their understanding of FD. Outreach efforts
currently under review by FD Village include:
A.) Ways to Avoid Crisis: A biofeedback training program
developed by NASA for motion sickness in astronauts and orthostatic
intolerance when they returned to earth may someday soon be used to
help those with FD fight the symptoms of dysautonomic crisis on their
own! This technique has already been applied with (earthbound)
patients with other forms of dysautonomia with significant reduction
in crisis symptoms and is being studied by several other
organizations interested in dysautonomia. One of the exciting things
about this technology is that from a center that will manage the
patients, patients can be trained in the technique over the internet,
anywhere in the world. Not only will this help our population, the
potential publicity might also help highlight the importance of FD to
other disorders and increase scientific interest in FD. We plan to
pursue a collaborative look into this program along with other
dysautonomic populations. More to come as developments arise...
B.) Help for Dry Eyes: One of the most significant symptoms
of FD is the lack of overflow tears, which not only results in the
need for artificial tears, but produces problems of corneal damage.
In addition, some with FD have also suffered from cataracts, and the
adult population has been reported to suffer from optic atrophy.
Furthermore, these eye problems and how the eye responds in FD can
help lead to a better understanding of FD.
This fall an International Conference on the Lacrimal Gland,
Tear Film and Dry Eye Syndromes: Basic Science and Clinical Relevance
will be held. This Conference is designed to: "assess critically the
current knowledge and 'state of the art' research on the structure
and function of tear film producing tissues, tears, and the ocular
surface in both health and disease." The conference also has as its
goal, "to promote an international exchange of information that will
be of value to basic scientists involved in eye research, to
physicians in the ophthalmological community and pharmaceutical
companies with an interest in the treatment of lacrimal gland, tear
film or ocular surface disorders." FDVillage is so thankful to
announce that Familial Dysautonomia will be part of this conference!

FDVillage will keep you posted, as more details become available
on both these topics.



3. NOTES FROM FD DAY:

To view notes on FD Day, see the FD Net archives (or your own
old mail files) for June 12 and 13 to read these postings. Of
particular interest was an update on gene research in which MGH
states a firm belief that the gene will be completely sequenced in
the next 4-6 weeks and thus the responsible mutation will be found in
the next couple of months.
Also discussed were two new pieces of equipment used in the
cystic fibrosis population and now used in FD for chest physiotherapy
(CPT) called the"Acapella" and the "ABI Vest".**
Finally, when asked about establishing cells at a brain and
tissue bank, Dr. Ostrer thought it would be a good idea and
encouraged discussion of such a cell line by the Medical Advisory
Board of the Foundation. See What's new at FD Village for a
discussion on this topic.

**AS ALWAYS, THIS IS NOT MEDICAL ADVICE AND AS SUCH ALL TREATMENTS
SHOULD BE DISCUSSED AND DONE WITH YOUR DOCTOR.



4. PESTICIDES AND FD:

The US Environmental Protection Agency (EPA) pulled the
pesticides Dursban and Lursban off the market in the US last week.
Why? They claim that it is harmful to children's nervous systems.
They further encourage limiting use on crops for human consumption
(and presumably recommend good washing of pesticide treated foods).
How does this affect us? The government has now recognized that the
thousands of clinically proven cases of dursban poisoning a year
reflects a significant danger to growing nervous systems and to
nervous systems at risk, such as those of individuals with FD.
Given that FD is a progressive disorder, exposing individuals
with FD to pesticides may accelerate the progression of symptoms.
(To quote Dr. James Gusella's NIH grant to find the DYS mutation, "FD
is devastating disorder that involves progressive neuronal
degeneration ...") Therefore it is prudent to use organic foods,
where possible. While many of the premixed formulas are not organic,
there is one organic toddler formula available (see: Welcome to the
babyorganic.com Home) Page! . It is also possible to supplement with
other organic foods (organic soy, rice, goat, or cow's milk; juices;
pureed foods; powdered drink mixes, etc). Cutting out pesticides
when possible, can help preserve the nervous system to a greater
degree while we await answers from the scientific community.



5. ADVOCACY (NC STATE BILL #10978):

This bill introduced to the NY State legislature by the
chairman of the Mental Health Comm, Assemblyman Jim Brennan
(BRENNAJ@...), will ensure entitlements for those
with FD. Please write him in support of this bill and include
information on what FD means to you. Also of value, write to your
own NY congressman/woman (find out who they are via League of Women
Voters). This bill has implications for those in other states as
well. By setting the example, the NY State legislature may make it
easier for similar actions in other states. See a sample copy of a
letter submitted to FD Village at the end of this Newsletter. Copy
and paste it into your own write mail and send it off today!



We hope you enjoyed our first issue of the FD Village Newsletter.
Please send us your comments and feedback at info@.... And
look for the next newsletter in the near future.


6. ADDENDUM:

SAMPLE LETTER FOR NY CONGRESSMEN:
June 5, 2000

Assemblyman Joseph Brennan
chairman
Mental Health Committee
416 Seventh Avenue
Brooklyn, NY 11215

Dear Chairman Brennan:

I am writing to you today to support Assembly Bill #10978, which was
introduced by Assemblyman Jeffrey Dinowitz.

Assembly Bill #10978 was introduced as a new bill to amend the mental
hygiene law to include the disease, Familial Dysautonomia (FD),
within the definition of a developmental disability.

FD is a genetic disease, which is present from birth. FD causes
dysfunction of the sensory autonomic nervous system. Those afflicted
have an inability to feel pain, suck, swallow properly, or feel
sensations of hot or cold. Those affected have problems eating,
maintaining normal blood pressure, often have spinal curvature, and
also have lung problems.

Offering individuals and their families support from the State will
be invaluable and I hope you can help make this bill into law.

Thank you for your interest and consideration of this very important
bill.

Sincerely,

Name
Address
City, State, Zip
Telephone
email