From Columbus OH, I can't really do much but surf the web. Here's what I found:
Brain and Pituitary Foundation of America President c/o Marlene Stephens 281 East Moody Avenue Fresno, CA 93720-1524 559-434-0610 (Voice)
NIH/National Institute of Neurological Disorders and Stroke "Brain Resources and Information Network" (BRAIN) Bethesda MD 20824 Phone #: 301-496-5751 800 #: 800-352-9424 Home page: http://www.ninds.nih.gov/
All I can think of is to think outside the insurance box when it comes to funding. Find a clinical trial; utilize what you can of the public health system; go to support groups not for the support but for the contacts; see if a doctor outside of the SF Bay area will work on it; search for grants or loans that will cover rare-disease surgeries. Otherwise, I wish you both the best of wishes and long and healthy lives. -H
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some ideas
Date: 2002-05-14 08:41 pm (UTC)Brain and Pituitary Foundation of America
President
c/o Marlene Stephens
281 East Moody Avenue
Fresno, CA 93720-1524
559-434-0610 (Voice)
NIH/National Institute of Neurological Disorders and Stroke
"Brain Resources and Information Network" (BRAIN)
Bethesda MD 20824
Phone #: 301-496-5751
800 #: 800-352-9424
Home page: http://www.ninds.nih.gov/
http://www.clinicaltrials.gov/
http://www.rarediseases.org/
All I can think of is to think outside the insurance box when it comes to funding. Find a clinical trial; utilize what you can of the public health system; go to support groups not for the support but for the contacts; see if a doctor outside of the SF Bay area will work on it; search for grants or loans that will cover rare-disease surgeries. Otherwise, I wish you both the best of wishes and long and healthy lives. -H