Daily Point of Light # 1895 May 9, 2001

“With every decision Thomas Duffy makes, he tries to find the quickest and most forceful way to grab people’s attention and direct it toward his cause.” This is how a recent article described Thomas Duffy’s latest effort to raise funds and awareness for Spinal Muscular Atrophy (SMA) and Families of SMA.

Spinal Muscular Atrophy is the leading genetic killer of children under the age of two. It is a degenerative neuromuscular disease that causes the loss of all voluntary movement in its victims. It is one of the most prevalent disorders, yet one of the least known.

Thomas Duffy learned about SMA when his daughter, Morgan, was diagnosed. He turned to Families of SMA for information and support. He quickly became one of the organization’s strongest supporters, fundraisers and advocates.

Duffy took his commitment to new “heights” this year. On March 28, he climbed atop a billboard in Scranton, Pennsylvania, and sat there for 24 hours. He raised nearly $25,000 and conducted countless interviews, helping to education the public about SMA.

Based on the success of this innovative fundraiser, Duffy convinced Audrey Lewis, executive director of Families of SMA, to join him in an even more ambitious challenge. He and Lewis climbed up under the JVC Globe in Times Square and sat outside, in blowing wind and sleet, for 36 hours. Those 36 hours represent 10 seconds for every child that dies from SMA each year. They were joined by dozens of volunteers on the ground that passed out materials and collected donations. That effort raised more than $40,000.

With these successes most people might quit, but Duffy forges ahead. He has developed a packet for other individuals interested in a billboard fundraiser and has enlisted car dealerships around the country to help support the research and services provided by Families of SMA.

SMA is an orphan disease; it does not receive the attention or funding of other well-known diseases, yet one in every 6,000 live births is affected. One in 40 people carries this disease, yet until it is diagnosed in their family, most individuals are unaware of their status as carriers. Thomas Duffy has helped to inform thousands of people about SMA, helped to connect families living with the disease to Families of SMA – the only group that provides patient and family support, equipment loans, educational seminars and research dollars, and helped to raise critical dollars in the search for a treatment and possible cure.