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by GingerD

Double H Ranch is a camp for children who are dealing with serious illnesses. Thanks to the camp’s amazing medical staff, Double H gives children who cannot attend conventional sleep-away camps due to medical issues a chance to go away, have fun, and be just like any other child. Just ask Susan and Mike Nadrich and their daughters, Madeline and Tyler.

“It’s one of the most amazing places. It’s magical,” said the East Amherst, NY mom.

Mar 14, 2016 Comments: 0
by GingerD

Lauren Petty uses an electric wheelchair because of balance issues. She has urinary and bowel incontinence. She’s had a g-tube for the last two years and recently got a G-J tube. She has dysautonomia. She needs medications throughout the day. Lauren has mitochondrial disease along with progressive brain atrophy and those are just some of her symptoms. "It's a lot for a typical camp to monitor," her parents, Jennifer and Bryan, say.

Feb 19, 2016 Comments: 0
by GingerD
10-year-old author focuses on what Mito kids can do 

“This book shows that even though children who have disabilities have their struggles, they can still do things in their own, different way.”

--Author Noah Polatty’s favorite line from a review of “Sports Impossible”

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Writing is a struggle for Noah Polatty. That’s what Brandi and Chad Polatty were told about their son, who has mitochondrial disease.

Dec 22, 2015 Comments: 0
by GingerD

 

1 girl + 1 community = big differenceBrionna & family have right equation to raise awareness

Never underestimate the power of one: one girl, one mom, one family, one community, one cause.

Nov 06, 2015 Comments: 0
by Christine Cox

On Monday, July 20, 2015, MitoAction submitted a comment to the FDA on its proposed Memorandum of Understanding concerning the distribution of products from compounding pharmacies.  The proposed Memorandum of Understanding would substantially limit the ability of compounding pharmacies to distribute compounded prescriptions across state lines.  Since many Mito families rely upon high-quality compounding pharmacies that often are located in states other than their own for preparation of the Mito cocktail and other supplements, the proposed Memorandum of Understanding would have a s

Jul 22, 2015 Comments: 0
by GingerD

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. 

Sep 11, 2014 Comments: 0
by GingerD

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.

Aug 24, 2014 Comments: 0
by GingerD

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.”

Aug 20, 2014 Comments: 0
by GingerD

DERRY, NH –Amy and Jason Marquis’ daughter was given a death sentence. Riley, also known as Little Miss Roo, has Leigh’s Disease, one of the most devastating forms of mitochondrial disease.

Aug 11, 2014 Comments: 0
by GingerD

Every year, Rita Cerruti makes more than 300 mitochondrial disease awareness ribbons to hand out at the MitoAction Energy Walk & 5K. And every year, they are gone in minutes!

It’s just one way Rita, 82, a lifelong crafter, raises awareness about the disease that affects her daughter, Lisa, team captain of LC’s MitoBusters. “Making these things is my way to raise awareness,” Rita said.

Aug 08, 2014 Comments: 0

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