12/16/2025
UT Center for the Treatment of Pediatric Neurodegenerative Disease
Providing medical care, performing research, and educating the community about mitochondrial disease.
The Center for the Treatment of Pediatric Neurodegenerative Disease is part of UT Health and affiliated with Memorial Hermann Hospital in Houston, TX. The Center is comprised of multiple sub-specialty clinics such as the Mitochondrial Clinic, the Leigh Syndrome Clinic, the Lysosomal Clinic, the Ataxia Telangiectasia Clinic, and Pedi Move. Director - Dr. Mary Kay Koenig
Faculty Members - Dr. Nick R
12/16/2025
09/22/2025
BIG NEWS!! https://stealthbt.com/stealth-biotherapeutics-announces-fda-accelerated-approval-of-forzinity-elamipretide-hcl-the-first-therapy-for-progressive-and-life-limiting-ultra-rare-genetic-disease-barth-syndrome/
FDA approved elamipretide for Barth Syndrome. CTPND is heavily invested in trials for this drug. This is the first and only FDA-approved treatment for any form of mitochondrial disease.
Stealth BioTherapeutics Announces FDA Accelerated Approval of FORZINITY™ (elamipretide HCl), the First Therapy for Progressive and Life-limiting Ultra-rare Genetic Disease Barth Syndrome - Stealth BioTherapeutics Inc. NEEDHAM, Mass., September 19, 2025 /P...
02/03/2025
Parent-Directed Special Education Services (PDSES) | Texas Education Agency The Parent-Directed Special Education Services (PDSES) program, previously, the Supplemental Special Education Services (SSES) program is a one-time $1,500 online grant for parents/guardians of eligible students served by special education and who are enrolled in a Texas public school. Parents/guard...
12/12/2024
https://www.youtube.com/watch?v=Oh-a_EKgp_Y
The PolG Foundation Film Film directed by Mei Fa Tan and produced by Montreux Media Ventures.You can donate at https://polgfoundation.kindful.com/
PSA: UTHealth Houston, including UT Physicians Clinics, is experiencing a system wide telecommunications outage. We are receiving emails, but NO phone calls.
05/28/2024
Lindsey Miller, LVN is honored by TMC Nurse Heroes Campaign
04/15/2024
This weekend at Children’s Memorial Hermann Hospital’s “Time of Remembrance Service,”Lindsey Miller and Janaei Phillips (Research Nurses) and Maria Poblete (Research Coordinator) represented CTPND as volunteers.
03/19/2024
Attention MELAS patients ages 12-17!
Tisento Therapeutics is sponsoring a research study to talk to individuals about their experience with MELAS. They will be evaluating an investigational drug in an upcoming clinical trial and they need Patient Voices. Time will be compensated.
INTERVIEWING NOW: PATIENTS WITH MELAS, AGES 12-17.
Click here for more details and next steps: https://bit.ly/TisentoMELASAges12-17
I am seeking feedback for our annual CTPND newsletter. Each year, I develop a theme, build out the framework for who will write what, and hope that we have provided new information to someone reading the newsletter. This year I want to do things a bit differently.... what sort of updates would YOU like to see? Research? Staff backgrounds? Infrastructure changes? Would love to hear from you and your family!
10/06/2023
Dr. Mary Kay Koenig was the featured speaker during the President’s Reception of the 52nd Annual Child Neurology Society meeting in Vancouver.
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6410 Fannin Street
Houston, TX
77030