Category Archives: Uncategorized

Disability Assistance

With few exceptions, most AMN guys that I have met carry a solid work ethic, regardless of their disability. Which is a good thing, since such characteristics are viewed favorably by our society. While some adaptions may be in order, it seems that most of us get in our 40 hours. We are the luckyContinue reading “Disability Assistance”

Maxime Rolls up to the Beach!

Maxime has taken advantage of a plastic mat to facilitate his access to the beach. I had the same fabulous experience many years ago in Wilmette, Illinois. This an example of a very low-tech, low-price, high impact adaptation. Anyone in a chair who has struggled in the sand would appreciate this simple accommodation. I haveContinue reading “Maxime Rolls up to the Beach!”

Take a look at my life, I’m a lot like you — Bill Pearse

I’ve been practicing what it feels like to be an old man for years now. An old man with all the good parts, none of the bad. The pace that is measured, unrushed. Days that spill out like a cracked egg always the same, always not. The solace of being left all alone. But also […]Continue reading “Take a look at my life, I’m a lot like you — Bill Pearse”

An AMN Role Model that I Can Aspire to Emulate: Tim Maguire

While I have met Tim a few times, and have always liked what I heard, he is a humble man: previous to me stumbling onto this video, I had not idea how far he has taken his acceptance of, and adaptation to, the disease that we share. I encourage everyone to take a look. IContinue reading “An AMN Role Model that I Can Aspire to Emulate: Tim Maguire”

Community Call: AMN Men

Every month, ALD Connect facilitates a Zoom Meeting where guys with AMN and their caregivers get together to talk about whatever they like. The next get together is set for the evening of August 3. This meeting is limited to guys with AMN and their caregivers. This restriction keeps the interactions safe and intimate. WhileContinue reading “Community Call: AMN Men”

Advocacy for Rare Disease Accelerated Approval

Today, the The Rare Disease Company Coalition sent this letter to committee chairs in both houses of the U.S. Congress, reminding them of the importance of accelerated approval of therapeutics to counter rare diseases. I applaud the Coalition for taking this important action. I encourage everyone to contact your member of congress to backstop thisContinue reading “Advocacy for Rare Disease Accelerated Approval”