• Received on June 6, 2000

Dear Lenore Roseman:

Thanks again for the great picture of us from the American Academy of Pediatrics Meeting last October. Rachel’s Bat Mitzvah is coming up June 17th. She will mention her Tzedakah project (volunteering with you) and will talk about Dysautonomia. We left some FD pamphlets last October at the Synagogue. In honor of her Bat Mitzvah, Rachel is donating some of her Bat Mitzvah money to the Dysautonomia Center, Mazon, and the American Association of Holocaust Survivors in Washington, DC. She is twinning her Bat Mitzvah with Rachel Sider from Lithuania who died in the Holocaust. We enjoyed meeting you and Maryon last Fall and hope to meet again.

Shalom,

Philip, Beth, Rachel and Jordana Kauffman

• Received June 2000

To Whom It May Concern:

Several months ago each student in my AP Biology class at the Ida Crown Jewish Academy was assigned a genetic disease to research. Each of us created an informational brochure on our assigned disease and then presented it to the class. My assigned disease was Familial Dysautonomia. My classmates and I then voted on which disease we believe would benefit most from our donations. Familial Dysautonomia was the winner, as we recognized the lack of funding for the treatment of the disease and severity of its symptoms. We hope that our donations will be helpful.

Sincerely,

Rachel Marshall and Mrs. Ruth Gleicher’s Advanced Placement Biology Class, 2000. Ed. Note: The donation was for $255.

"I have always fantasized about owning one of these exotic cars. With hard work and perseverance, I hopefully will. But the biggest dream I have is finding a cure for Familial Dysautonomia or "FD". It is a rare Jewish genetic disease that affects the autonomic and sensory nervous system. In honor of my Bar Mitzvah, a donation has been made in your name to FD in hopes that my dream will come true.

"Josh’s Auto Show"

• Letter From Conrad M. Riley, MD to Shirley Arnstein

(Ed note: Dr. Riley is one of the two doctors who identified the illness first known as Riley-Day Syndrome.)

Dear Mrs. Arnstein,

I received your wonderful book (No Tears) and was fascinated by your account of the wonderful life that Lois had despite her being afflicted with Familial Dysautonomia. Since leaving New York in 1960 I have had no further contact with the condition, but as I read your book I could recognize every feature. What was so wonderful was how much she accomplished in her short life and this could be inspiring to other families with similar problems. It is a beautiful book!

Thanks so much for sharing the heart warming story—

Most sincerely,

Conrad Riley

• Received June 2000