I am privileged to have a great vantage point in my role as chairman of MDA’s Board of Directors. Decades of engagement in my current and other MDA volunteer capacities have given me rich, life-changing experiences – and to this day I marvel at the generosity, commitment and passion of my fellow volunteers.
Here’s how I see it: If families are at the heart of everything MDA does, then volunteers are the lifeblood that energizes our every heartbeat.
Here’s how I see it: If families are at the heart of everything MDA does, then volunteers are the lifeblood that energizes our every heartbeat.
This week I’ve been particularly reflective given two milestone occasions: a memorial service to honor a fallen giant in MDA’s history and a glorious ceremony to honor another faithful MDA servant. Both represent the very best of MDA volunteers who give generously and love lavishly in support of kids and adults who live with muscular dystrophy, ALS and other muscle-debilitating diseases.
A Broadcasting Giant who Carried MDA to Great Heights
The Labor Day Telethon that brought MDA’s mission and families into American living rooms for more than half a century was clearly synonymous with Jerry Lewis, to whom MDA will forever be grateful. Every front man needs great support behind the scenes though.
One of those behind-the-scene giants for us at MDA was Bob Bennett, who passed away in December at the age of 89. Bob was former president, chairman and emeritus member of the MDA Board of Directors. Over the weekend there was a beautiful service where several MDA friends joined Bob’s wife Marjie and his children to celebrate Bob’s life well lived.
Bob was the person most responsible for making the telethon the institution it became operationally and the fundraising powerhouse that fueled incredible MDA progress. The two drugs which were approved by the FDA in recent months—the first specifically for Duchenne muscular dystrophy and SMA—had their beginning due to telethon-powered research investments.
A man highly accomplished in the television industry who wanted to give back to our great cause, Bob was the leading architect of the legendary Love Network of 200 TV stations. So much of the hopeful momentum underway in the neuromuscular disease community today is built on a foundation Bob fortified.
From his first introduction to MDA in 1969 when he was vice president and general manager of WNEW-TV, then the New York affiliate of the Jerry Lewis Labor Day Telethon, to his role as president of MDA from 1995 to 2001 and board chairman from 2001 to 2005, Bob gave selflessly of his talents to ensure MDA’s place in the pantheon of American philanthropy. During Bob’s board leadership, MDA was involved in countless breakthroughs.
Honoring a Champion of Inclusivity for his Service
Bob’s tenure on the board overlapped with the appointment of a young, promising disability studies scholar whose ties to MDA extend back to his own diagnosis in an MDA Clinic with muscular dystrophy at the age of 9. Dr. Chris Rosa, who joined our ranks in 1997, has in the two decades he’s served on the board helped guide MDA in new directions and remained a vocal champion for the families we serve.
I was privileged last Tuesday to present to Chris the 2017 Champion of Spirit Award at the New York Muscle Team event, which set new records that night thanks to incredible generosity from our New York friends. The recognition was given in honor of Chris’ demonstrated passion, drive and commitment to making a difference in the lives of people living with neuromuscular disease.
Both as a faculty member at CUNY’s master’s program in Disability Studies, a published disability studies scholar and advocate for New Yorkers living with disabilities, Chris exemplifies MDA’s live unlimited spirit. He also is living proof of MDA’s life-saving work.
As Chris put it last week,
“My [initial] prognosis wasn’t good, but thanks to the care that I got through MDA’s remarkable care centers and through path-breaking research, I’ve lived way beyond my life expectancy, and I’ve lived to achieve really remarkable things on my own terms, things that we all cherish — to live and love with my family, to build a career, to fall in love, and to have my heart broken, and to live to love again. All the things that we cherish about rich and meaningful lives.”
Both Bob and Chris epitomize the very best of MDA, modeling the same type of dedication we see in MDA summer camp buddies, IAFF members who raise funds with their boots, community groups who support our local events, and so forth.
Service is what united these two remarkable individuals, and a passion for helping the neuromuscular community is just one of the things they have in common. What they also share is my gratitude and respect for exemplifying not only the best of our volunteers, but also the best of people – like so many of you who power our work.
With heartfelt thanks and respect,
R. Rodney Howell, M. D. Chairman, MDA Board of Directors
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