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MitoAction Blog

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 Christine Cox

Please join us on Wednesday, April 20 for the next installment of the MitoAction Advocacy Podcast Series. 

Apr 13, 2016 Comments: 0
by GingerD
Join us Friday, April 1, 2016 at Noon (EST)/9 a.m. (PST) as Dr. Amy Goldstein provides an update on the Mitochondrial Medicine Society.Areas of discussion include: Transplantation in Mito patientsStroke protocol for MELASStandards of care for Mito patientsCenters of Excellence and the need for community involvement/input

 

Mar 28, 2016 Comments: 0
by Christine Cox

As patients or caregivers, it is frightening to think about what would happen if we could not advocate for ourselves.  Fortunately, there are legal documents that can be used to communicate our wishes under such circumstances.  This type of legal preparation is called incapacity planning and guardianship.  

Mar 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
by GingerD

Elite athletes know how to get the most bang out of their mitochondria, often training at high elevations to force their bodies to work more efficiently in “thinner air.” Endurance increases, recovery time decreases, and mitochondrial capacities change, allowing the athletes to work harder and perform better.

Mar 13, 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 Cristy Balcells
What are fatty acid oxidation disorders, and why are they related to mitochondrial disorders?

Join us this month on Friday February 5th, 2016 with Dr. Jerry Vockley, University of Pittsburgh Cleveland Family Professor of Pediatric Research and Professor of Human Genetics at the Children's Hospital of Pittsburgh of UPMC. Dr. Vockley is the Chief of Medical Genetics and Director of the Center for Rare Disease Therapy.

Additional areas of discussion include: 

Jan 25, 2016 Comments: 0

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