Wealthy Facioscapulohumeral Muscular Dystrophy Patient Invests $100 Million to Find a Cure  


Chip Wilson, billionaire founder of Lululemon Athletica, was first diagnosed with muscular dystrophy in 1987 at the age of 32.

Wilson, who is now 66 years old told Global News Today that he was in good physical condition at the time he started having symptoms. At first, he began having difficulty swimming across the pool. When he began to have back pain, he decided to see a doctor.

After being examined by a neurologist, Wilson learned that he had a rare type of facioscapulohumeral muscular dystrophy type 2(FSHD2).

Wilson was determined to maintain good muscle performance. As he explained, he is a Type-A personality when it comes to athletics. He managed to live a relatively normal life in spite of the disease until other symptoms began to appear.

Three years ago, he fell at the airport when he returned from a business trip to China. Wilson did not think his fall was unusual as the floor at the airport had just been polished. He got up, walked about fifteen feet, and fell again.

It became apparent to Wilson that the muscle in his left foot was not responding. His next challenge was not being able to raise his hand.

About Facioscapulohumeral muscular dystrophy type 2 (FSHD2)

Facioscapulohumeral muscular dystrophy (FSHD2) is a rare form affecting 5% of patients with FSHD which is, in itself, a rare disorder. The disease affects facial muscles, shoulder blades, and upper arms.

Wilson explained that in eight years with continued disease progression, he may be confined to a wheelchair with about 40% of his skeletal muscles having deteriorated.

Wilson describes his current symptoms in terms of the amount of pain he is experiencing. He refers to the pain in his shoulders as “quite extraordinary.”

Wilson’s Donation Towards a Cure

Not one to be easily deterred, Wilson has a plan. He is starting a venture capital named “Solve FSHD2” to find a cure for the disease by the latter part of 2027. Wilson is donating $100 million towards the venture. He is one of about 500 of the wealthiest people in the world.

The start-up will focus on finding a cure for the disease and muscle regeneration. Wilson said he wants to focus on rebuilding muscles as he believes that muscles facilitate balance, especially with respect to the elderly. The obvious result is fewer injuries from falls and the possibility of adding ten or fifteen years of life.

Wilson mentioned that Solve FSHD will also invest in research and companies that perform clinical trials.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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