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Author: Jeannie


Florence mother sees hope while 2-year-old son battles incurable disease

FLORENCE S.C. (WPDE) — Aneesa Licorish said the past year has been hard for her two-year-old son, Jeremiah Gracen, but she is encouraged that he’s showing signs of improvement. Jeremiah...


MitoAction and Cure Mito Foundation Announce Partnership with AllStripes Research

This partnership will support multiple Leigh syndrome research projects and fuel development of future treatments. September 19, 2020 — MitoAction, a nonprofit organization founded to make a measurable impact...


Annie’s Adventures: remembering an old friend and raising funds to help new ones

LOCKPORT, N.Y. (WKBW) — While taking your cans or bottles to places like Upstate Bottle Return in Lockport, you might see a donation bin. One bin at that location...


Matthew Cosentino Ready To Walk The Falmouth Road Race

Around the pediatric unit of Mass General Hospital, Matthew Cosentino, 23, is known as “Mattie Miracle.” At the age of 10, he was diagnosed with mitochondrial disease, a chronic...


Respite care provides a much-needed break from caregiving for parents of kids with disabilities

This article is part of State of Health, a series about how Michigan communities are rising to address health challenges. It is made possible with funding from the Michigan Health...


Reneo Pharmaceuticals Announces First Patient Dosed in the STRIDE Study

Reneo Pharmaceuticals, Inc. Wed, July 28, 2021, 8:00 AM·3 min read IRVINE, Calif., July 28, 2021 (GLOBE NEWSWIRE) — Reneo Pharmaceuticals, Inc. (NASDAQ: RPHM), a clinical stage pharmaceutical company...


A glimmer of hope: Virginia Tech researcher creates cell lines to help treat mitochondrial diseases in children

The mitochondrion has garnered quite the reputation for its role as the “powerhouse of the cell.” These tiny, but mighty organelles play various life-sustaining roles, from powering our own...


17-year-old Akron girl named ‘Erie County Citizen of the Month’ after raising over $15,000 for OCH

AKRON, N.Y. (WKBW) — 17-year-old Annie Leeds of Akron was named Erie County’s Citizen of the Month after she helped raise over $15,000 for Oishei Children’s Hospital by donating...


Mother pays tribute to 11-year-old Winder boy who died from rare mitochondrial disease

Camden “SuperCam” Fortner, 11, of Winder, died June 14 as the result of complications from Pearson syndrome, an extremely rare mitochondrial disease that carries a short life expectancy. A...


The Importance of Seeing a PCP When You Have a Rare Disease

I met my new primary care physician (PCP) on a frigid winter morning. I sat in the waiting room clutching my partner’s hand, a file folder spread open on...