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Mito “Maine”-iacs captain feels freedom at walk

Health and family issues kept Sheridan Johnston from attending the last few MitoAction Energy Walks but this year a healthier Sheridan is rarin’ to go!

Sheridan is thrilled to feel that walk “vibe” again. “There are no words to describe what it feels like to be a patient on that day,” she said. “There’s some sort of freedom on that day … being around people like me. There’s a camaraderie that’s instantly felt. We build each other up.”

Sheridan and some family members were sitting around a campfire when she got an email from MitoAction about this year’s event. She asked her family right then if they wanted to do it and they told her to sign up right now! So she did.

The Mito “Maine”iacs – and all their funky props -- are back! And for the first time, Sheridan won’t be using a wheelchair, a walker, or a cane at the walk.

The MitoAction Energy Walk & 5K, presented by Stealth BioTherapeutics, will be held Sunday, Sept. 17, 2017, at DCR’s Mother’s Rest in South Boston, MA. This family-friendly event, designed to raise awareness about mitochondrial disease and funds for MitoAction, features a walk, a scenic 5K, and a day of fun for all ages and abilities. For more information and to register as a walker, runner, or virtual participant, visit www.mitoaction.org/walk.

Sheridan attended her first MitoAction walk about a year after her mitochondrial disease diagnosis. “Back then, I wanted to connect with other people with Mito,” she said from her Westbrook, ME, home. “I wanted to get a feel for the community.”

She said she was awestruck at her first walk, knowing that she didn’t have to explain herself to anyone because everyone around her knew what she was going through.  She remembers feeling: “I am surrounded by people who totally get me … for the first time.”

Mitochondrial disease is a chronic genetic disease that can be present at birth or develop later in life. Targeting the higher energy requiring body systems, Mito causes debilitating physical, developmental, and cognitive disabilities. Symptoms may include: poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities, and heart, liver, or kidney failure. Approximately 1 in 4,000 people lives with Mito. This disease is progressive and has no cure.

This year Sheridan is looking forward to reconnecting with people she hasn’t seen in a while and meeting new people.

Raising awareness is also a highlight of the walk for Sheridan. “We’re raising money to put the words [mitochondrial disease] in front of doctors and researchers and keep the diagnosis in the forefront as best we can,” she said.

MitoAction is a nonprofit organization dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives.

Proceeds from the walk fund MitoAction programs and resources that help families living with mitochondrial disease, including the Mito 411 help line, Marcel’s Way Family Fund, monthly speaker series and weekly support groups, comprehensive website and iTunes library, educational programming, advocacy efforts, and so much more

For more information, email walk@mitoaction.org or call 888-648-6228. To register, visit www.mitoaction.org/walk.

To learn more about MitoAction, please visit www.MitoAction.org.

 

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