You're not the first guy who's been motivated to search for a cure for his own disease. Go straight to the source. Contact the leading researchers and ask about

You're not the first guy who's been motivated to search for a cure for his own disease. Go straight to the source. Contact the leading researchers and ask about doing a PhD with them or something (I'm not sure how academia works, I never could figure it out). Surely they'd be happy to have motivated researchers. You'll also be on the cutting edge of advanced experimental treatments and you can experiment on yourself someday (if you want).