This is one of the most difficult blogs I have ever written, but I wanted to make sure the community heard it from us first and has accurate information.


Lee Sweeney has been diagnosed with throat cancer. The diagnosis came on an ordinary day. Lee and I were on the phone on a regular ‘catch up’ call. Lee had spent the previous two weeks in Dallas. His father had a stroke and Lee (typical) was caring for his dad and holding his mom and sisters together. There was fatigue in his voice. His throat was sore. He mentioned that the sore throat had been pretty consistent over the last two weeks, but it was the last thing on his mind with his dad in the ICU. He mentioned that he had a scan, that the radiologist might call, and he would put me on hold. Sure enough, the radiologist called. After a few minutes, he came back.  His voice changed.  He said the radiologist wanted to see him in her office. She could not discuss the results of the scan by phone. We knew.


For the next weeks, Lee would become an expert on throat cancer. His type of cancer is caused by the human papilloma virus.  It is a squamous cell carcinoma.  After considerable study and consultation, we know that this type of cancer is treatable. The treatment isn’t easy, but the statistics are favorable. With chemotherapy and radiation, he will be cancer free. He will start induction chemotherapy for the next eight weeks, followed by radiation for eight weeks. 


He continues to lead the PPMD research team with Sharon Hesterlee. Bob McDonald and I are part of their team. Our focus continues to be combined therapeutics, as well as, the cardiac initiatives. That will not change or lose speed.


After Chris and Patrick died, Lee pulled me up by the bootstraps. He said if I stayed, he would work with the Duchenne community to accelerate therapies. And he has kept his word. He has gone out on so many limbs to help all of us. I cannot say that he thinks more about Duchenne than parents of young men with Duchenne, but I can say he thinks about Duchenne 99% of the time.


In 1995, he said we needed to lobby Congress. In 1999, he published on Gentamycin and premature stops. In 2001, he testified at the risk of losing grant money, criticizing the government’s lack of investment. In 2002, he helped craft the language, resulting in the CDC’s investment to develop Care Considerations. In 2006, he and PTC received the $15 million grant for Project Catalyst.  And he leads a Wellstone Center, just to name a few of his many accomplishments. He is a dear friend, a trusted colleague, and one of the brightest and best in the world of Duchenne.  


For me personally, he walks on water…Whatever your religious belief or custom, send good karma, prayers, well wishes, or a rabbit’s foot for that matter. We need Lee strong and healthy, to complete what he started, to help change our son’s world, to end Duchenne.

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Comment by Donna Skibo on April 7, 2011 at 11:52am
All of us are thankful for all the work & dedication Lee has shown the MD community. We will pray for his complete recovery in the coming weeks.

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