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 Lori Ware on April 30, 2011 at 11:33pm

Dear Lee, I am just now reading this! I am sorry I am so late in knowing.  I pray that your treatment will be easier than expected, your faith unshakeable and your resolve steady.  I can't imagine the stress you are under with your father and now yourself.  My father too has had a massive stroke and I know that is difficult. I will keep him and your mother in my thoughts and prayers as well.  I am walking that road (6 yrs down that road) and it is not easy.  You are an amazing man and we are thankful everyday for you.  I hope you can lean on us for a while like we have leaned on you!

In our prayers!  The Ware family

Comment by Perlita & Gordy Hains on April 18, 2011 at 12:49pm

Dearest Lee -  my heart is full of emotion; The Hains' will PRAY for you each & every nite   strong hugs


Comment by Keith Van Houten on April 15, 2011 at 8:38am
Best wishes from the Van Houten family...
Comment by Mandy on April 10, 2011 at 9:46pm
Prayers and good wishes are being sent to Lee from our entire family. We are so grateful for his dedication to our DMD boys.
Comment by Janell Lundy on April 10, 2011 at 6:32pm

Alec's Prayers Warriors are praying for Dr. Sweeney

Comment by Lance Hester on April 8, 2011 at 1:45pm
Prayers from the Hester family.
Comment by Julie Garcia on April 8, 2011 at 3:24am
Lee, is truly a hero to our duchenne families and I am forever grateful to him, his staff and all who help our children along the way.  Yes, we need him and so many others can learn from his compassion and heart.  The world is not done with him, wishing him healthy, sending him prayers, positive thoughts, good karma and only the best! 
Comment by Vee Lail on April 8, 2011 at 1:08am
Our thoughts, prayers, best wishes and good karma to Lee during this difficult time. With all the good he has done for us and our community, he has built up lots of good karma. We appreciate everything and wish him a speedy recovery so he can complete the amazing things he has started.

Vee & Kelly Lail
Comment by Christine Piacentino on April 7, 2011 at 9:46pm

Good Karma, wishes, prayers and a rabbit's foot for a strong and healthy recovery.  I needs to complete what he started!

Comment by Debbie Dupree on April 7, 2011 at 8:49pm
I have felt Lee has always been there for us (DMD families), I hope he knows how much we appreciate him and all he has done to help find a treatment for this disease.  It is our turn to show him support for now!  I am praying for Lee and his entire family!

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