Peter Dion is a 10 year old boy that loves offshore fishing, his little sister Maggie is 6 years old and also loves boating and being out on the water. They grew up tagging along with dad on many adventures on their family boat. Unfortunately, this fall they were both diagnosed with Limb Girdle Muscular Dystrophy type 2C. LGMD is a disease that causes muscle wasting and ultimately results in loss of the ambulation by teenage years, eventually affecting heart and breathing muscles. Our hope is that Peter continues to be able to do things he loves, like off shore fishing and will be able to fish the Nantucket Big Game Battle with his father Joe on the vessel Thunder.   

Because of this devastating news, the Dion family has started The Dion Foundation for Children with Rare Diseases. With this foundation they strive to bring awareness and raise funds to further research for a treatment for this ultra-rare disease.

At The Dion Foundation we are driven by the most profound motivator – unconditional love for our children and a commitment to pave the road ahead rather than sit back and wait for a cure. We are committed to changing the lives of all children with LGMD. We are relentless in our pursuit and we will not stop until we have exhausted all options. 

There will be no rest until our ultimate goal is achieved. The science of gene therapy is advancing and with much hope there will be a drug to slow the progression of the disease within the future. We will not stop knocking on doors and searching for options. We invite you to join us as we push forward towards raising awareness and hope for children with rare diseases. 

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