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by GingerD
Raising awareness -- one medical student at a time

“Her story and many experiences with physicians will serve as a guide to help make me a more empathic and humble physician.”

“You remind us that being a physician is more than merely diagnosing and treating illness; it is about seeing and understanding the patient as a person.”

Sep 12, 2017 Comments: 0
by GingerD
Students write book to raise awareness

Mighty Mito is not fun.Mighty Mito does not get things done.I can’t always play.I have to stay,even on the finest day.Some days are fun,when I have the energy to run.Some days are sad,when I just feel really bad.Even though I sometimes cannot run,

Sep 12, 2017 Comments: 0
by GingerD

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.”

Aug 02, 2017 Comments: 0
by GingerD

Kayla West’s cousins have mitochondrial disease. “I helped them feel like normal kids,” she said. “That’s what they wanted.”Kayla spent two years helping to take care of her cousins before her family moved from Washington to Texas. She would make sure they didn’t get too hot; she hooked them up to their heart monitors, oxygen, and feeding tubes before bed; she played with them; and she carried them if they needed it. “They became a huge part of my life,” she said.

Feb 07, 2017 Comments: 0
by GingerD

The groom and groomsmen wore BowTie Cause MitoAction bowties. The bridesmaids wore green. Every guest got a MitoAction bracelet. Even the wedding invite was green and included the Mito ribbon.

The bride, Devon Gottfurcht, has mitochondrial disease and she used her wedding to Dan DeSario as a vehicle to raise awareness about Mito. “There’s not a lot of awareness for mitochondrial disease,” she said.

Oct 26, 2016 Comments: 0
by GingerD

After Jessica Gemayel lost her battle with mitochondrial disease a few months ago, her friends gathered to figure out what they could do in her memory.

Courtney Brown, Jessica’s best friend since middle school, and the rest of their gang decided to form Team Jess for the MitoAction Energy Walk & 5K presented by Stealth BioTherapeutics on Sunday, Sept. 18.

Jun 17, 2016 Comments: 0
by GingerD
Mitochondrial disease part of curriculum for Long Branch, NJ, seventh-graders

The seventh-graders at Long Branch (NJ) Middle School know about mitochondrial disease thanks to a creative teacher.

May 19, 2016 Comments: 0
by GingerD

 What does quality of life mean to you?

One challenge when creating clinical trials for people with mitochondrial disease is the tremendous diversity that exists in our community. Even patients with the same genetic diagnosis may have different symptoms and varying degrees of severity.

May 09, 2016 Comments: 0
by GingerD

Lincoln Ogonowski’s mitochondrial disease limits his mobility, so big brother Luke Krumich will often play with Lincoln’s toys for him. “I know what he likes and what he thinks is funny,” Luke said.

Lincoln is 3 years old and has Leigh’s syndrome, a devastating form of mitochondrial disease. Luke, 12, is his protective, loving, awesome older brother. The sons of Dyna and Rob Danger of Freehold, NJ, are as close as brothers can be.

Apr 18, 2016 Comments: 0
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

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