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Mitochondrial disorders are characterized by complex presentation of multiple symptoms. Due to a variety of factors, including heterogenity of the disease, erratic symptom presentation and general lack of awareness about the condition, families with mitochondrial disease are more often faced with accusations of medical child abuse than other conditions. Living with mitochondrial disease and serving as one's own advocate impacts the entire family on a daily basis.
MitoAction has joined Patients and Physicians for Rx Access, a coalition addressing the issue of insurance cuts to compounded medication coverage.
(From Dr. Stacpoole's Benefunder Research page)
KINGSPORT, TN -- The Castle family’s goals are simple: raise awareness about mitochondrial disease, move forward, and live.
They count their blessings and thank God for all that they have, especially Cooper. “Cooper is here because of the hand of the Lord,” Chris Castle said about his 6-year-old son.
Cooper coded when he was 12 hours old, starting this Fall Branch, TN, family’s mitochondrial disease odyssey.
BALTIMORE, MD —Charlie Bainbridge is a real daredevil. The Catonsville, MD, boy who is battling mitochondrial disease is the inspiration behind “Charlie B's Daredevils,” a team of 22 walkers who will return for the fifth consecutive year to walk in MitoAction’s Energy Walk and 5K in South Boston, MA, alongside other families and patients affected by mitochondrial disease.
Stephanie Deady is a little apprehensive about attending her first MitoAction Energy Walk & 5K. It’s been a whirlwind year since her son, Logan, was diagnosed with mitochondrial disease and she still hasn’t processed it all.
“Being around so many people with similar issues makes it so real,” said the North Providence, RI, mom.
“I wake up and I just do it. I just move forward, because I have to. When I stop and think about it, the tears will come. I want to meet other people, but I don’t want to cry.”