Thank you to everyone who attended this fun event with music, shoes, and plenty of shotguns, for Jaxson’s Cure.
Blog Archive
Blog
Can Existing Drugs Treat CMT?
HNF, in partnership with Rarebase, is leading the charge in the first-ever research initiative to tackle multiple types of CMT in one project using its tech-enabled drug discovery platform called “Function.”
SORD Webinar – Part 2 – Clinical Trial Update
Clinical Trial Update for SORD Deficiency – Applied Therapeutics – Dr. Shoshana Shendelman
Battersby Lab Donor Story: Fighter Moms Donate to Vital Research into Mitochondrial Diseases
Battersby Lab Donor Story Fighter Moms Donate to Vital Research into Mitochondrial Diseases
The Key Role CMT Patients Play in Research
Without your participation, researchers won’t have the essential patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies. In addition, as GRIN grows, we gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies.
Applying for Social Security Disability 101
The Social Security Administration (SSA) doesn’t make it easy for those with CMT to get the Social Security Disability Benefits they deserve.
What is SORD Deficiency?
Could you be 1 of the estimated 3300 patients in the US with the gene causing SORD Deficiency?
Real Talk with Joey Nicoletti
Joey’s family has a history of Charcot-Marie-Tooth, and he decided to get tested at the end of 2019. He learned at the age of 23 that he had CMT-1B and needed to adapt his way of life so that he could continue performing.
How to get genetic Testing: The CMT Genie
Trying to get a genetic confirmation of CMT can be overwhelming, and you might not have access to healthcare providers who are familiar with all the choices out there.
SORD INSPIRE Phase III Clinical Trial
HNF Partner Applied Therapeutics is Currently Enrolling SORD Deficiency Patients for the INSPIRE Phase III Clinical Trial
The Future of CMT Research
Hear from Allison Moore, Founder/CEO of the Hereditary Neuropathy Foundation about the past, present and future or research.
Setting Healthy Boundaries
Setting healthy boundaries is part of self-care and self-respect. It is being assertive without the need to be aggressive. Healthy boundaries can help us define our uniqueness and our core. Boundaries are not just about getting what we want. It’s about getting to live our lives on our own terms.
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CMT Type – CMT1A (22)
CMT Type – CMT1B (2)
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Awareness (34)
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CMT (1)
CMT en Español (1)
CMT Summit (53)
CMT Update (74)
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CMT-Connect Webinars (10)
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Webinars – Bracing (1)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (3)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (6)
Webinars – Genetic Testing (1)
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Webinars – Newly Diagnosed (2)
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Webinars – Surgery (2)
Webinars – Telemedicine (1)
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Community (3)
Emerging Technologies (1)
Faces of CMT (1)
Faces of CMT – Addie (2)
Faces of CMT – Bernadette (9)
Faces of CMT – CMT4A (7)
Faces of CMT – Grace (18)
Faces of CMT – HELP Fund (8)
Faces of CMT – HNPP Fund (3)
Faces of CMT – James (1)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (28)
GRIN Patient Registry (39)
HNF Team (10)
Industry (3)
Living with CMT (78)
Medical professionals (2)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (3)
Clinical Trials (21)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (11)
Breathing (3)
Canine Companions (5)
Cannabis (8)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (9)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (11)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (7)
Nutrition (3)
Occupational Thearpy (2)
Pain (8)
Podiatry (4)
PT and Exercise (25)
Research and Critical Trials (29)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (10)
Registry (16)
Research (95)
School Outreach Program and Team CMT Kids (1)
Special Events (2)
Bike New York (19)
Other Events (4)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (61)
The CMT Genie (6)
TRIAD (28)
TRIAD – Clinical Trial Readiness (5)
Vitaccess (1)
TRIAD – Research Gifts (0)
University of Helsinki (2)
Veneto (1)
TRIAD – Sponsored Research (0)
Burke Insitute (3)
University of Cambridge (1)
University of Miami (1)
University of San Antonio Texas (1)
TRIAD – Therapeutics (4)
Applied Therapeutics (10)
Pharnext (10)
Rarebase (4)
Types of CMT (1)
CMT Type – CMT1A (22)
CMT Type – CMT1B (2)
CMT Type – CMT1X (3)
CMT Type – CMT2A (9)
CMT Type – CMT2C (5)
CMT Type – CMT4A GDAP1 (3)
CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
CMT Type – HNPP (3)
CMT Type – MTRFR-C12orf65 (6)
CMT Type – SORD Deficiency (9)
Upcoming Events (3)
Ways to Give (4)
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