On Thursday April 21, 2016, over 160 Zach supporters gathered for the 1st Casino Night to benefit CMT6!
Blog Category
Faces of CMT
Total posts in Category: 1
HNF 1 Of 20 Rare Disease Groups Selected To Develop Natural History Studies By NORD
The Hereditary Neuropathy Foundation is proud to be included among leading rare disease groups, as we collectively aim to fill the research gaps to better understand how these rare diseases progress over time.
H.E.L.P. Card Party CMT2A Fundraiser
HNF is proud to report that over $36,000 was raised for research for CMT2A at this annual event!
CMT 6 Football Event
On October 23, 2015 the Victor New York Blue Devils Football boosters and coaching staff dedicated their first playoff game from their undefeated season to team manager Zach Houliares.
Breaking Down The Barriers Of Charcot-Marie-Tooth Disease
Kristin is redefining what it’s like to live with Charcot-Marie-Tooth disease. Determined to be seen for who she is, rather than her disability, Kristin faces the daily challenges of CMT head on with grace, dignity, and perseverance.
Kristin’s story not only shows us how she is redefining herself, but how she is giving others living with CMT the courage to do the same. Let’s learn more about Kristin and how she’s breaking down the barriers of CMT.
Save the Date: Friday January 29, 2016 Boca Raton, Florida to Benefit CMT Type 2
Charity Card Party Brunch and Boutique Please join us January 29, 2016 at 10:30 at Broken...
Hereditary Optic Neuropathy
Optic neuropathy is one of the symptoms of a less common form of Charcot-Marie-Tooth disease known as CMT6.
Chrome Diva’s First Annual Motorcycle Scavenger Hunt
On Saturday July 25, 2015, Debi and Tom Houliares hosted the first annual Chrome Diva’s Motorcycle Scavenger Hunt in Webster, New York to raise awareness and funds for CMT Type 6.
A New Mouse Model for Charcot-Marie-Tooth (CMT2)
We were recently informed that The Jackson Laboratory (JAX, a nonprofit biomedical research institution headquartered in Bar Harbor, Maine) had taken delivery and will be distributing a newly generated CMT-related mouse model. The new model expresses mutant mitofusin 2, a mitochondrial membrane protein involved in mitochondrial fusion and regulation of vascular smooth muscle cell proliferation.
Sixth Annual Card Party Brunch
On January 23, 2015 dedicated H.E.L.P. (Help Elliot Live Proud) Fund supporters participated in the 6th Annual Card Party Brunch and Boutique at Broken Sound County Club, Boca Raton, Florida. Record numbers flocked into the picturesque country club for a day filled with gourmet food, raffles, cards and a silent auction! HNF Board member Iris Adler increased this event by 50 new faces this year!
Saturday July 25, 2015: The Rochester Chrome Divas Charity Benefit
To raise awareness and fund research for CMT6 in Webster, New York!
August 16, 2015 Grace’s Courage Crusade Eighth Annual Fundraiser
Please join us for this amazing event to benefit Grace’s Courage Crusade, a passionate mission of the Sidoti/Caldarone family to support those living with Charcot-Marie-Tooth disease
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Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (28)
GRIN Patient Registry (39)
HNF Team (10)
Industry (3)
Living with CMT (77)
Medical professionals (2)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (3)
Clinical Trials (17)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (12)
Breathing (3)
Canine Companions (5)
Cannabis (8)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (8)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (13)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (8)
Nutrition (3)
Occupational Thearpy (2)
Pain (8)
Podiatry (4)
PT and Exercise (25)
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School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (9)
Registry (15)
Research (91)
School Outreach Program and Team CMT Kids (1)
Special Events (1)
Bike New York (19)
Other Events (4)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (60)
The CMT Genie (7)
TRIAD (23)
TRIAD – Clinical Trial Readiness (3)
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)
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Applied Therapeutics (9)
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CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
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CMT Type – MTRFR-C12orf65 (5)
CMT Type – SORD Deficiency (8)
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