Xtreme Volunteerism - Would You Kumbaya for Your Cause?

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This Sunday, August 1st, Dr. Katherine Sims, Director of Developmental Neurogenetics at Massachusetts General Hospital, Gordon Russell, Boston entrepreneur, and his son Jonathan will each leave the comfortable confines of their Boston area homes to become volunteer counselors for a week at Camp Korey in Seattle, Washington.

MitoAction

For Dr. Sims, Mr. Russell and his son, the week provides a chance to share the opportunity of a lifetime with 50 children afflicted with mitochondrial disease a disease that for Dr. Sims and the Russells has been a major force in shaping their lives.

As one of the founding members of MitoAction, a 501(c)3 charity whose mission is to improve the quality of life for individuals and families affected by mitochondrial disease, Dr. Sims is heavily invested in caring for her patients with mitochondrial disease, and is also involved in advanced research in the field that will improve testing for and identification of mitochondrial disease. Mitochondrial disease is often misdiagnosed and is under-recognized due to the difficulty and complexity of the tests that can definitively identify the disorder. Mr. Russell, who now serves on MitoAction’s Board of Directors, knows first hand of the struggles associated with mitochondrial disease. His wife Sandra, having been diagnosed in 2005, lost her battle with mitochondrial disease in August of 2008. He, and his son Jonathan will be counselors at Camp Korey’s ‘Mito Week’ on the second anniversary of Sandra’s death.

Camp Korey’s Mito Week promises to be “xtreme”. Kids of all ages and abilities who have this neuromuscular degenerative disease in common, will share a camp experience that all children dream of. Fishing on the lake, roasting marshmallows, spa night, horseback riding… all the camp activities that ‘normal’ kids talk about. But this week, because all campers have mito all mito campers are ‘normal’ in spite of their life threatening medical issues. Many children with mitochondrial disease are unable to walk or talk, and some require a feeding tube to stay alive. Camp Korey, as a provisional member of Paul Newman’s Association of Hole in the Wall Camps, offers programs that are specifically designed for children with chronic or life-threatening illnesses, creating positive recreational experiences where children with serious illnesses are understood and accepted. In 2008, thanks to the leadership of Sandra and Gordon’s close friend Suzan Chavez, Camp Korey recognized the lack of opportunities for children with mitochondrial disease and created and launched the first “Mito week” in the summer of 2009. Mitochondrial disease is more common than cystic fibrosis in children. There is no cure for mitochondrial disease and very few resources exist to support patients and their families.

MitoAction was founded by a team of Boston doctors, nurses and patients in 2005 to meet the direct needs of patients and their families struggling to deal with the daily devastation of mitochondrial disease. Recent research suggests that 500,000 people in the US have mitochondrial disease, although only 50,000 have been accurately diagnosed.

This wonderful week of camp dedicated exclusively to benefit children with "mito" takes place August 2-7 at Camp Korey in Seattle, WA. For these ‘mito’ kids, the chance to go to Camp Korey is a once in a lifetime opportunity. For Dr. Sims and Mr. Russell it is the opportunity of a lifetime.

MitoAction is proud to sponsor campers from across the US, making it possible for kids with Mito from out-of-state to go to camp. To support this fund and give a child the opportunity to go to "Mito Week" at Camp Korey, please consider making a tax-deductible gift at http://www.MitoAction.org/donate and designate your gift for "Camp".

For more information, contact Cristy Balcells, Executive Director 888-648-6228

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Cristy Balcells
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