HNF has added a new component to its successful School Outreach Program, aimed at deepening students’ understanding of disability as a difference that can be embraced as one part of a beautiful whole.
Blog Archive
Blog
Join Us for a Private Screening of Bernadette: January 29th in New York City
On Wednesday, January 29th, jewelry designer jaKe & anna will be sponsoring the NYC premiere of BERNADETTE at the old time soho Angelika Film Center in Manhattan. 50% of sales from this viewing will go to the Hereditary Neuropathy Foundation (HNF).
HNF Charity Partner for the MetroTex Charitable Trust Run For Fun Irving, Texas: Saturday May 3, 2014
The Hereditary Neuropathy Foundation (HNF) has been chosen as the Charity Partner for the MetroTex Charitable Trust Run for Fun.
HNF Charity Partner: TD Five Boro Bike Tour May 4, 2014
HNF is thrilled to have been chosen for the 4rd year as a Charity Partner for the TD Bank Five Boro Bike Tour
TEAM CMT & CHRIS WODKE
Boasting a growing membership, Team CMT and the Hereditary Neuropathy Foundation (HNF) are celebrating a successful first year of collaboration.
Personal Profile: Estela Lugo, Designing Décor
As a little girl, Estela Lugo now 32, always knew she would do “something with art” when she grew up. “I was drawing, always drawing,” she remembers.
Dr. Robert Baloh Answers Our Questions About iPS Cell Research
Big news is happening on a cellular level at Cedars-Sinai Medical Center’s Regenerative Medicine Institute in Los Angeles, CA. Robert H. Baloh, MD PhD, Director of Neuromuscular Medicine, in conjunction with Patrick D. Lyden, MD Neurology Dept. Chair, and Clive Svendsen, PhD, Institute Director, are studying disorders that start in nerve cells.
March 2013: Arlene sequel available!
Arlene, the Rebel Queen will be available in March! You can get a copy on Amazon, Barnes and Noble, or most other retailers and wholesalers.
HNF Signs Coalition Letter to Congress
On November 1, CMS announced in the 2013 Medicare Physician Fee Schedule that it will severely reduce payment for EMG and NCS.
Running for Three Generations with CMT
These days, inspired by his love of family he runs on behalf of three generations of women with Charcot-Marie-Tooth disease
Grace’s Courage Crusade Brunch 2012
Warm temperatures and brilliant sunshine welcomed several hundred guests attending Grace’s Courage Crusade this year
Arlene On the Scene: Barrington Books Fall Festival
Together, she and Carol answered questions from young and old alike about Charcot-Marie-Tooth (CMT). “The festival was such a nice opportunity to let kids know about Arlene and raise awareness about CMT,”
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Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (3)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
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Webinars – Genetic Testing (1)
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Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (2)
Webinars – Nutrition (1)
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Webinars – Surgery (2)
Webinars – Telemedicine (1)
Webinars- Emotional and Mental Health (5)
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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