June 14, 2012

I am deeply touched at the response we’ve received.  The donations, words of support and encouragement, love and kindness have been overwhelming and I am grateful.  Some of the most striking responses were from people who have known friends or family members who have struggled with MSA.  This battle has led me on a journey that I never thought I would encounter.  Two years ago, I had a battle with cancer, received treatment, and was cured.  MSA is more challenging because it is rare and at this time, there is no cure.  By comparison, there are approximately 12 million people in the U.S. battling cancer at any given time ¹; for MSA the number of people at any given time is approximately 50,000.  Thus, the resources for cancer are tremendous while MSA and other rare diseases struggle for solutions.  Money is one of the obstacles to discovery and private sector financing is critical to funding research at medical insitutions like the Mayo Clinic.  Your donation can truly be lifesaving.

Many people have asked how I am doing.  I naively thought these types of struggles only happened to other people but not to me.  Wrong.  MSA has been dropped in my lap and I have to live with it.  It’s truly a struggle and a difficult disease.  However, my wife Julia, my love, soul mate and best friend, helps me find the power to fight this battle.  My adult children, Jeremy, Emily, and David, and their spouses, Jennifer and James, give me extra power.  And my network of friends provide additional support to lean on.    But since illness is part of life, MSA is the challenge I’m facing and the love and support I have received is therapeutic and reminds me I am not alone.

1. American  Cancer Society, http://www.cancer.org