September 8, 2008

Kerry S. Klein
108 E. 38th Street #1901
New York, NY 10016

Dear Family and Friends:

I've decided to do it again...the New York City Marathon.   The race last year was one of the most incredible experiences of my life. I'll forever remember the feeling each time I reached a point where my family and friends were waiting to cheer me on and I'll never forget the screaming crowds throughout each of the diverse neighborhoods of the City.  Making the day even more special to me was the fact that I was running in support of the Opsoclonus Myoclonus Support Network.  I'm raising money for the organization again this year and I need your help!

The organization is important to me, as my cousin Michael was diagnosed with Opsoclonus Myoclonus Syndrome (OMS) many years ago.  OMS is an extremely rare neurological disorder.  Onset is typically during infancy and it's characterized by an unsteady gait, muscle jerks of the arms, legs and eyes and difficulty speaking.  OMS is also associated with sleep disturbance, irritability, and learning delays.  The disorder is very rare and therefore greatly under-researched.

Each dollar that I earned went directly to the 501-C3 organization, which works to fight this life-changing disorder. With the money that I raised, the efforts of the organization have heated up tremendously. A member of the group was sent to London to attend an OMS Conference and a firestorm of events followed since then, which include:

An international parent group has ignited and is now in its formative stages.  Network members met with legislative aides to Senators Kennedy & Kerry to secure support for increased funding for orphan disease research, which includes OMS.  The network has recruited the assistance of Dr. Marcel Kinsbourne, a renowned Neurologist, in the study of OMS and Vicki Sudhalter, a language disability expert in New York to assist in the production of a brochure to be distributed to parents and/or practitioners dealing with OMS patients.

They've identified a research team headed by Dr. Robert Darnel (Rockefeller University in NYC).  Part of Dr. Darnel's study requires proper gathering, preparation, and storage of spinal fluid and tissue for his research lab.  The Support Network is studying the possibility of establishing an agreement with the National Disease Research Interchange for this purpose.  The cost of this contract would be $1,000.

This year, I've set a goal of raising $5,000.00, which will go directly to the Support Network to help with the above-listed projects.  Most sponsors are donating lump sum dollar amounts and others are pledging per mile of the marathon.

Please help me raise money to continue these efforts. Any contribution would be greatly appreciated! Donations can be made by sending a check payable to "The Opsoclonus Myoclonus Support Network" to my address listed above. A receipt will be provided upon request, as donations are tax deductible. Please note that many employers match donations to non-profit groups.

I appreciate your support and encouragement!

Thank you!

Regards

Kerry