While uncommon, people deeply researching their loved ones disease have had success: https://en.wikipedia.org/wiki/Augusto,_Michaela,_and_Lorenzo...

Even just fundraising for diseases yields tangible results. Some folks dismissed the viral ice bucket challenge, but it raised over $100 million dollars and funded a lot of research in ALS: https://en.wikipedia.org/wiki/Ice_Bucket_Challenge

Hopefully he accomplishes new knowledge discovery and/or fundraising for research into this disease.