These days, inspired by his love of family he runs on behalf of three generations of women with Charcot-Marie-Tooth disease
Blog Archive
fundraiser
Joe Torello, Music Man
While running the Philly Half-Marathon, Joe will be raising funds for the Hereditary Neuropathy Foundation (HNF). So far, he has raised $ 1105.00 through private donations and hopes to gain corporate sponsors as well.
Hampton’s Spin 2012: Booming Success
Rainy weather in New York didn’t deter 125 people from attending The Hereditary Neuropathy Foundation’s 4th Annual Hampton’s Spin Event on July 28 to raise awareness and research funds for Charcot-Marie-Tooth.
Personal Profile: Alyson O’Connor, Fitness Instructor & Volunteer Fire Fighter
A volunteer fire fighter for eight years, Alyson has managed to stay active, in spite of her CMT symptoms.
Personal Profile: Nick Zappola
In an effort to connect with and support other people who have Charcot-Marie-Tooth, Nick developed his own website.
Fundraiser for CMT Awareness a Huge Success
Almost 10 now, Erin was diagnosed Charcot-Marie-Tooth (CMT) four years ago. Over those four years there have been numerous trips to Boston for treatment and surgery.
July 28, 2012: Hamptons Spin-a-thon & Party!
The Hereditary Neuropathy Foundation (HNF) is thrilled to partner with B East Amgansett, NY and The Breakwater Yacht Club, Sag Harbor, New York, for our Fifth Annual Spin for the Cure.
June 3, 2012: Wine, Beer and Vodka Tasting
Join us on Sunday, June 3, 2012 in Wolcott, CT for a Wine, Beer and Vodka tasting to raise money and awareness of Charcot-Marie-Tooth.
May 5, 2013: Five Boro Bike Tour
HNF is thrilled to have been chosen this year as a Charity Partner for the TD Bank Five Boro Bike Tour.
Spotlight: Bike New York Riders
On Sunday, May 5, 2013 among the crowd of 32,000 cyclists expected to participate in New York City’s TD Five Boro Bike Tour will be two busy New Yorkers cycling to raise awareness of and funds for Charcot-Marie-Tooth.
December 1-3, 2011 – Champions for Charity
For the the first time ever, the Hereditary Neuropathy Foundation will participate in Americana Manhasset and Wheatley Plaza’s Champions for Charity®.
Running Marathons to Raise Awareness of Charcot-Marie-Tooth
“America’s Friendliest Marathon,” held in Richmond, VA this past weekend, included some important friends of the Hereditary Neuropathy Foundation who ran to raise awareness of Charcot-Marie-Tooth and to generate funds for research to find a cure.
Categories
Advocacy (10)
Awareness (42)
Centers of Excellence (13)
CMT (2)
CMT en Español (1)
CMT Summit (63)
CMT Update (74)
CMT-Connect (29)
CMT-Connect Webinars (11)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (2)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (4)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (7)
Webinars – Genetic Testing (3)
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Webinars – Surgery (2)
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Community (7)
Emerging Technologies (1)
Faces of CMT (2)
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 (2)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (49)
Gene Therapy (1)
GRIN Patient Registry (46)
HNF Team (10)
Industry (6)
Living with CMT (89)
Media (1)
Medical professionals (3)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (11)
Clinical Trials (24)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (37)
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 (9)
Family Planning (1)
Fashion and Products (3)
Genetic Testing (12)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (11)
Nutrition (5)
Occupational Thearpy (2)
Pain (8)
Podcasts (2)
Podiatry (4)
PT and Exercise (26)
Research and Critical Trials (41)
School & College (8)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (6)
Pediatrics & CMT (13)
Registry (19)
Research (106)
School Outreach Program and Team CMT Kids (3)
Special Events (3)
Bike New York (21)
Other Events (5)
Spin-a-thon (7)
TCS New York City Marathon (9)
Team CMT Members (64)
The CMT Genie (6)
TRIAD (31)
TRIAD – Clinical Trial Readiness (6)
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 (12)
Pharnext (10)
Rarebase (4)
Types of CMT (1)
CMT Type – CMT1A (25)
CMT Type – CMT1B (5)
CMT Type – CMT1X (6)
CMT Type – CMT2A (13)
CMT Type – CMT2C (6)
CMT Type – CMT4A GDAP1 (4)
CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
CMT Type – HNPP (4)
CMT Type – MTRFR-C12orf65 (6)
CMT Type – SORD Deficiency (12)
Upcoming Events (2)
Ways to Give (7)
Awareness (42)
Centers of Excellence (13)
CMT (2)
CMT en Español (1)
CMT Summit (63)
CMT Update (74)
CMT-Connect (29)
CMT-Connect Webinars (11)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (2)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (4)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (7)
Webinars – Genetic Testing (3)
Webinars – Home Accessibility (2)
Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (5)
Webinars – Nutrition (3)
Webinars – Pain (5)
Webinars – Podcasts (3)
Webinars – PT and Exercise (9)
Webinars – Research and Clinical Trials (14)
Webinars – School and College (5)
Webinars – Surgery (2)
Webinars – Telemedicine (1)
Webinars- Emotional and Mental Health (5)
Community (7)
Emerging Technologies (1)
Faces of CMT (2)
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 (2)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (49)
Gene Therapy (1)
GRIN Patient Registry (46)
HNF Team (10)
Industry (6)
Living with CMT (89)
Media (1)
Medical professionals (3)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (11)
Clinical Trials (24)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (37)
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 (9)
Family Planning (1)
Fashion and Products (3)
Genetic Testing (12)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (11)
Nutrition (5)
Occupational Thearpy (2)
Pain (8)
Podcasts (2)
Podiatry (4)
PT and Exercise (26)
Research and Critical Trials (41)
School & College (8)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (6)
Pediatrics & CMT (13)
Registry (19)
Research (106)
School Outreach Program and Team CMT Kids (3)
Special Events (3)
Bike New York (21)
Other Events (5)
Spin-a-thon (7)
TCS New York City Marathon (9)
Team CMT Members (64)
The CMT Genie (6)
TRIAD (31)
TRIAD – Clinical Trial Readiness (6)
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 (12)
Pharnext (10)
Rarebase (4)
Types of CMT (1)
CMT Type – CMT1A (25)
CMT Type – CMT1B (5)
CMT Type – CMT1X (6)
CMT Type – CMT2A (13)
CMT Type – CMT2C (6)
CMT Type – CMT4A GDAP1 (4)
CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
CMT Type – HNPP (4)
CMT Type – MTRFR-C12orf65 (6)
CMT Type – SORD Deficiency (12)
Upcoming Events (2)
Ways to Give (7)
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