Husband, Father, and Rare Disease Advocate
Organizations to Support
Below are organizations that I believe are doing good work and deserve your support financially, or more, if you have the means.
Santa Monica, CA
Seattle, WA
Austin, TX
Aliso Viejo, CA
Danbury, CT
New York, NY
My Rare Diseases
Periodic Paralysis & Recurrent Meningitis
My Rare Diseases
Recurrent meningitis is the first rare disease I learned I had. My first hospitalization with viral meningitis was when I was 21, and I was diagnosed with recurrent viral meningitis on my second hospitalization when I was 32. We have found that even between episodes that require hospitalization I also have daily symptoms of meningitis.
The second rare disease I learned I have is periodic paralysis. I started having regular paralysis attacks when I was 39. The probable diagnosis for my subtype, hypokalemic periodic paralysis, was given at 41. We are still researching to verify my specific subtype. Looking back I believe I started showing sporadic symptoms at age 15, but since they only occurred yearly or less we didn’t look further into it.
Check out the resources below for information on rare diseases.
Periodic Paralysis Resources
Periodic Paralysis Association
The Periodic Paralysis Association is a Non-profit Charitable Corporation founded to foster awareness of the periodic paralyses, promote science-based information regarding this class of disorder, and champion the interests of the Periodic Paralysis Community.
Periodic Paralysis International
We are mission-driven, independent and not-for-profit. Our website reflects our mission to make medically accurate, up-to-date information about the periodic paralyses accessible to patients, caretakers and physicians. Our goal is to help create successful partnerships between physicians, researchers and periodic paralysis patients in order to speed diagnosis and improve therapy and management strategies, thereby improving quality of life and clinical outcomes for patients.
Muscular Dystrophy Association
We’re fighting to free individuals — and the families who love them — from the harmful effects of muscular dystrophy, ALS and related life-threatening diseases so they can live longer and grow stronger.
Recurrent Meningitis Resources
Recurrent Meningitis Association
The Recurrent Meningitis Association is using advocacy through research to support those with the rare disease recurrent meningitis. The Recurrent Meningitis Association is a non-profit 501(c)(3) corporation advocating for recurrent meningitis globally.
Rare Disease Resources
Global Genes
Global Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations.
National Organization for Rare Disorders (NORD)
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
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