Yahoo! Groups Tips
Did you know...
Hear how Yahoo! Groups has changed the lives of others. Take me there.
|
| Familial Dysautonomia Hope Newsletter, June 2001 |
Message List
|
NEWSLETTER OF FD HOPE June 2001
Introduction by Editor, Mavis Feinberg:
Last month we began this monthly newsletter with a general welcome, an
overview of our goals, and a request for all to join us in our efforts to
find a better life and a cure for all our FD loved ones. In this issue we
are moving on to articles of missions accomplished or currently underway,
which may inspire you to help, with YOUR ideas and YOUR efforts. Please
contact me at any time, with questions or ideas of how we all can work
together and reach our goals as soon as possible: mavis.al@...
--Thanks!!
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
A Message from FD Hope President, Sonia Peltzer, M.D.:
The Board of Directors of FD Hope takes very seriously its message of
inclusion. We welcome any input or participation that will contribute to our
goal of finding a cure and more successful treatment options for those with
FD. We will be having a Board retreat next month and welcome any suggestions
or comments that you would like to have considered. Please e-mail or call me
or any of our Board members with your ideas. We want to hear from you. -----
Sincerely yours, Sonia Peltzer, M.D., (828)466-1678,
speltzer2@...
****************************************************************
Pilot Public Education Project by Mike Rancer
With discovery of the genetic defect that causes FD, there is now an
increased need for public awareness of FD. Combined with genetic screening
of potential parents, this can lead to a reduction in future cases and more
timely diagnosis and treatment of the cases that do continue to appear.
There are five components to a successful program, and we are going to
undertake a pilot effort in Northern California to attempt to manage them
into an integrated whole. The five components are:
(1) An institutional structure that will support a continuing program of
outreach and education;
(2) a program that will integrate FD awareness with that of the other major
Ashkenazi diseases such as Tay Sachs;
(3) a funding base that will enable a large enough program to reach widely
throughout the community and penetrate deeply into it;
(4) a broad plan to make continuing contact with every group that can
provide entree to the Jewish population; and
(5) a targeted plan to educate those physicians most likely to come into
contact with FD and other Ashkenazi diseases.
Here in Northern California, where only four cases of FD have been diagnosed
in the last 20+ years, despite the large size of the Jewish population, we
are beginning to develop such a program. The intent will be, over a defined
period of years, to reach a significant and measurable level of
genetic testing and counseling and to improve the diagnosis rates for
children who are born with FD and other Ashkenazi diseases. More will be
reported as the program develops.
..............................................................................
...............................
FD Hope Contributions to DDW Conference by Sonia Peltzer, M.D.
In May 2001 FD Hope represented FD at the Digestive Daily Week (DDW)
Conference in Atlanta. The DDW Conference is the largest gastrointestinal
conference in the world, with over 15,000 clinicians and researchers in
attendance. It was an exciting time, and we accomplished so much more than
we had ever hoped to accomplish. We produced a booklet entitled "The
Gastrointestinal Tract in Familial Dysautonomia", a flyer summarizing the key
features of the GI involvement in FD, and we conducted a survey of GI issues
among individuals with FD. FD Hope sponsored a booth and a scientific
meeting at the DDW Conference.
Through our efforts we were able to accomplish the following:
(1) Our booth was well attended by the conference participants (we
distributed over 500 packets of information);
(2) We educated numerous physicians who had been previously unaware of FD,
including several Jewish New York gastroenterologists and Israeli
gastroenterologists. We have over 20 names of physicians who are interested
in more information on FD;
(3) We stimulated much interest in research on FD, particularly interest in
research of clinical importance. Several doctors expressed the desire to
remain "in the loop" of research interests in FD;
(4) We sponsored a meeting on FD, attended by twelve physicians, during
which we presented cases and discussed possible interventions for particular
situations;
(5) We learned of research and technologies which may be of relevance to
those with FD, and we will be pursuing these ideas;
(6) We made contacts with several other non-profit organizations who are
very interested in working with FD Hope toward our common goals;
(7) We were approached about submitting an article on FD for publication in
a peer-reviewed journal and have followed up on that offer.
------FD Hope's representation of familial dysautonomia at the DDW Conference
was a huge success. We hope to represent our children's interests at future
conferences for other specialties that affect those with FD in the near
future. Together, we can do much to help those with FD. FD Hope is
committed to finding a cure. We hope you will join us in this search with
your donation of time, energy, talents and/or money.
------If you are interested in receiving a copy of the GI booklet and
brochure, please send your request to: Sonia Peltzer, M.D., 1457 O'Brian
Dr., Newton, NC 28658.
-----Your generous donation to FD Hope will help to defray our costs and
allow us to pursue future conferences and fund the research necessary to find
a cure. Please send your tax deductible donation to "FD Hope" to: Kenneth
M. Slaw, PhD, 1170 Green Knolls Dr., Buffalo Grove, IL 60089.
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
Advocacy for FD by Scott Kutner
We all know that advocacy can take various forms. In the case of FD, it
usually involves ordinary parents or grandparents taking on extraordinary
challenges. Take legislative advocacy as an example. On the face of it,
getting a new law passed which addresses FD and the need for state funded
developmental services, i.e. occupational training and independent living,
certainly doesn't appear to be an arena for the inexperienced. There are 58
counties in California, for example, and each one operates their own Regional
Center for developmental services.------Nevertheless, a group of California
parents is now "working the system" and thus far has succeeded in having a
bill to establish FD statewide eligibility protocols introduced to the State
Legislature, passed by the State Assembly, and recently sent to the State
Senate for consideration. There will be future episodes to share about the
California effort, but regardless of the outcome, it serves as a reminder to
us all that we are ready, willing and able to accomplish the extraordinary on
behalf of our loved ones.
****************************************************************
Fund-Raising: How to Get Media Coverage, How To Do More in Your Community by
Sondra Mallow ------How to get media coverage? Easy! Call your local
newspaper or TV station. Ask for the one who does "health issues" in the
news and speak to that person. Ask them if they would be interested in doing
a story on FD. It will be much more successful if you volunteer your family
for photos and personal information about the disease and how it has affected
you, your child, and your family. Then you give general information about
FD, including where to be tested and where to call for more information or
donations.------If you wish to do more in your community, you will have to
contact local organizations within your own Jewish community. Go to a
meeting. Ask if they will help you. Many organizations will be willing and
able to help (such as Hadassah, National Council of Jewish Women, your own
synagogue and those around your area, men's groups, etc.) ---- Use your own
local Jewish newspaper to get the word out about FD. If you are unable to
write your own article, perhaps someone could help you. YOU have to learn to
ask for help! Give your community information to read, our web site, and
information about donating to FD Hope. Some of us may have friends who are
able to give large donations or introduce us to people who know how to raise
funds and will help us. If you do not want to talk about your personal
situation, let me help you. I will send you my story so that you can make
copies and pass them out.----If you can't get started, please feel free to
call me at (904)260-9308. We'll talk and we'll figure out what would be good
for you and your family. I do many things at once (I keep "churning the
pot", so to speak). To my surprise and delight, many fine things are going
to happen. Sometimes it takes time, but sometimes it just takes
talking.----In addition to helping with fund raising and educating your
community, you will be getting out in public, helping yourself to deal with
what life has dealt you, networking and meeting others, making new
friendships and renewing old ones. All this has helped me cope and feel more
like I can control an aspect of my life that I felt I had no control over
before. I hope it helps you as well. Be well!
|
speltzer2@...
speltzer2@...
 Send Email
|
|
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
