Thank you to everyone who attended this family-friendly event with costumes. Check out the photo gallery!
Blog Category
Faces of CMT
Total posts in Category: 1
The Miracle We’ve Been Praying For!
Alana Kohler’s story of having CMT4A.
Meet the Kohler Family: Alana has GDAP1
Alana Kohler’s story with CMT4A.
10yo Addie sings her version of Try by Pink to raise awareness of CMT
Addie rewrote Try by Pink into a song about her disease and recorded it to raise awareness.
Calling all Grandparents (and Parents)!
Join Iris Adler as she continues fundraising for her grandson and the many others living with Charcot-Marie-Tooth Type 2A
EmBRACE It Podcast with Lainie Ishbia and Estela Lugo
We want our CMT viewers and listeners to feel like they can relate to us, and that it’s perfectly okay to be imperfect!
Hope for the Future for Owen
A gene therapy is within our reach for GDAP1 (CMT4A), an autosomal recessive loss of function disorder and effecting many patients like Owen.
HNF tackles the hidden mysteries behind the genetic diagnosis of CMT mitochondrial diseases
C12orf65 gene, a rare form of CMT also known as Leigh Syndrome is robbing young children of a normal life even beyond the classic CMT symptoms.
StarWise Therapeutics & HNF Form A Strategic Alliance to Bring a NextGen HDAC6 Drug Therapy to CMT2A (MFN2) Patients
HNF has been committed to funding HDAC inhibitor research since 2014.
CMT6 (c12orf65) “One gene, two diseases”
C12orf65 can present as two different types of diseases called CMT6 and Leigh’s Syndrome. Both diseases are caused by dysfunction of mitochondria, the energy factory of our cells, and are progressive and, many times, devastating.
Traveling With A Disability
We interviewed Bernadette to ask her to share her tips and tricks for traveling with a disability.
Grace’s 2017 Courage Crusade: Fundraiser for CMT2
We had another amazing turnout for our 9th annual Grace’s Courage Crusade fundraiser for CMT2.
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Faces of CMT – Jaxson (7)
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PFDD (1)
PFDD Meeting 28SEP2018 (5)
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Canine Companions (5)
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TCS New York City Marathon (7)
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