Thank you to everyone who has emailed me or commented to offer their condolences. It means a lot to me and my family to know that others have been there or just that they're thinking of us. My Dad has suffered from Multiple System Atrophy (MSA) for several years, so this wasn't entirely unexpected. But it's never easy to lose a close family member.
As a thank you and as a tribute to Dad, I'm going to support the National Dysautonomia Research Foundation by donating $1 for every comment this blog receives between August 23 and September 30 (up to $500). Instead of just writing a check, I hope to raise a little awareness, too.
Lack of knowledge about MSA poses a major challenge to patients and their families. We know that the disease causes hypotension, failure of muscle coordination, and other symptoms, but there's next to nothing known about why people get it or how to treat it.
MSA doesn't have a celebrity spokesperson, an awareness month, or a network TV special, so my understanding is that it's tough to get funding for research. All you can really do is try to make the patient as comfortable as possible, as they slowly wither away. We did our best with Netflix, BookSwim, and frequent visits.
My Dad was a Renaissance man who committed himself to science and philanthropy, so I know he would have wanted me to support scientific research on MSA. Thank you again for everyone's emotional support.