A Light Goes Out – Goodbye to Ben Cumbo, PAAC Member

Ben Cumbo died last night. While Heaven is brighter today, our world has lost a great light.

I first met Ben in 2001. We testified about the importance of the MD-CARE Act. He was very young then, but his wisdom apparent. He talked about the cost of a Stealth bomber, on average $737 million each. He asked Senator Spector if he was willing to put the cost of one Stealth toward muscular dystrophy research. He stopped the conversation. And today, 14 years later, NIH/DOD/CDC have fulfilled his request.

Ben decided to read for a while before going to sleep last night. His father waited for his call. There was no call, only silence, and he found Ben slumped over. In single moment, Ben was gone. He was just 27.

There are no words to capture Ben. He was an extraordinary individual, a magnificent force of nature. His presence made you smile, want to sit closer, to listen, to hang on every word. He was wise, intelligent, and kind. He was devoted to ‘move the needle’ for muscular dystrophy, for disabilities, for humanity.

Mary Lou Weisman said it best…There is no word to describe the loss of Ben, the loss of any of our sons. None fit, None are appropriate. We are left empty, heartbroken and wondering why.

To the Cumbo family. We love you. Thank you for sharing Ben.

Ben, until we meet again, please shine your light and guide our way forward.

Ben's Celebration of Life

Blog updated to include Ben's Celebration of Life documents on May 15, 2015

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Comment by Alpa Khushalani on April 23, 2015 at 1:21pm

Ben - Thank you for everything you have done for our sons. May your soul rest in peace and continue to provide strength to your loved ones. 

Comment by Shelly on April 23, 2015 at 6:56am
My eyes are tearing down..i can't help...its big loss. May his soul depart in peace. I also salute him.
Comment by Jennifer Bauer on April 22, 2015 at 5:27pm

I am so sorry to hear of the loss of Ben.  He was in the PAAC group with my brother, Matt. I am sure all the men in the group are devastated right now.

Comment by Klaartje Spijkers on April 22, 2015 at 4:39pm

Farewell Ben, brave warrior. I salute you and your loved ones. Your brave life is an example for our life and many others with Duchenne. Thank you and fare well

Thank you Pat for sharing 

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