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Subscription Information:
FD-Net is an email network for Familial Dysautonomia
families, caregivers and interested professionals.
Participants contribute questions, thoughts, observations
and articles that are in any way related to to FD. Since
it began in 1994, FD-Net has become the primary means of
communication and mutual support for about 100 families,
including about 40% of all the FD families in the United
States. But FD-Net is not at all limited to the US, as it
has members from all over the world, representing every
continent except Africa. As with the disorder itself, the
second largest number of FD-Net participants are in
Israel. As the largest and most active daily forum for the
exchange of family-to-family information on this disorder,
FD-Net welcomes all who wish to share in our continuing
dialogue. FD-Net is designed for educational purposes only
and is not engaged in rendering medical advice or
professional services. Any medical or other decisions
should be made in consultation with your doctors.
To subscribe to FD Net, send an email message to
Barry Orton. In
the body of the message type: SUBSCRIBE FD-NET [YOUR NAME]
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Message
recently posted by FD Hope:
Dear FD families:
Recent postings on FD-Net have highlighted major
differences between the research programs supported by FD
Hope and the Dysautonomia Foundation. Having received
inquiries as to the different approaches, the Board of FD
Hope felt it would be useful to expand on some of them for
those who may not be fully aware of our organization.
FD Hope, a parent-run foundation, currently supports
cutting-edge research at top universities in the United
States and Israel, laboratories that are focused on
practical applications that can be used now. One lab,
which discovered the FD gene, has developed nutritional
therapies that are already making remarkable improvements
in the lives of FD patients. The other two labs, in
Israel, are engaged in significant gene therapy work that
we expect will lead to long-lasting treatments. All three
labs published peer-reviewed research papers in each of
the past few years that have advanced the science, and
most importantly, the clinical health of children with FD.
We do not believe there is another FD organization more
focused, and with a greater sense of urgency and demand
for productivity than FD Hope. The researchers supported
by FD Hope have taken their work personally, and all have
very personal ties to children with FD. FD Hope's research
program could be greatly accelerated with additional
funding. FD Hope urges you to join us in getting these
researchers the money they need to help our children in
the coming months and years.
FD Hope also serves your family by informing you about
recent advances in treatment, including those we have
funded, and others that we learn about. We continue to
revise our website at www.fdhope.org with research and
treatment updates and other useful information, in order
to help families make the best choices for their children.
Our most recent newsletter, which described current FD
research in detail, can be downloaded at our website, or
we would be happy to mail copies to you or others who
might like to receive them.
I wrote recently about the importance of supporting and
embracing all efforts to help our children. I want to
reinforce this message. Any organization that seeks to
criticize or degrade the work of another organization or
researcher seeking to help our children should prompt
questions about that organization's true motives.
Our children need treatment centers and "centers of
excellence" across the country. Our children need research
conducted with a sense of urgency and that is focused on
stopping suffering today-as well as cures for tomorrow.
Our children need us to hold
our researchers accountable for expeditious and high
quality results.
New and expanding options about where to seek treatments
that offer the best chance for clinical improvement are a
direct consequence of intensive efforts by FD Hope, and
are directed specifically toward enhancing treatment
modalities beyond what has been available. For more
information on our research program, and/or to make a
donation online, please visit our website. Or if you want
to contact us directly or help us raise money call our
headquarters in Chicago at 847-913-0455.
FD has taken too many lives already. Yes, much has been
learned, but it is not enough, and it is not fast enough.
Please help FD Hope save lives and end the suffering
caused by FD. We share your sense of urgency. Send your
contributions, memorializations, and tributes to:
FD Hope
1170 Green Knolls Drive
Buffalo Grove, Il. 60089
With best wishes of health for all of our children,
Kenneth M. Slaw, PhD
President |
