Joe is an active member of Team CMT and we appreciate all he does for HNF. He has been busy performing, raising awareness and exercising for a cure! While Joe was performing The Music Man at Philadelphia’s Walnut St. Theatre
Author Archive
Courtney
School Outreach Program Spreads Its Message Nationwide
From Narragansett to Quidnessett, Coventry to Providence, Warwick to Johnston, we met amazing students at every school. We even ventured into southern Massachusetts, to Braintree and Arlington.
Meet Abby Ziff, Sales Director, Strategic Accounts, WebMD.
Meet Abby Ziff, Sales Director, Strategic Accounts, WebMD. CMT advocate who is passionate and dedicated to helping all of us in our mission to bring awareness and raise funds to cure CMT.
One Woman’s Success with Surgery
Read about how this CMT patient endured seven surgeries over the past dozen years to cope with the effects of CMT.
Meet your Team CMT Manager
I was diagnosed with CMT type 1a in August of 2010. I was relieved to put a name to symptoms I’ve had my whole life.
BERNADETTE SCARDUZIO: The Face of Charcot-Marie-Tooth Disease
In mid-October 2012, I had the opportunity to interview Bernadette Scarduzio (Bern). She is a lovely young woman who suffers from Charcot-Marie-Tooth
Assay Depot And Rare Genomics Institute Award Prizes To Study 26 Rare Diseases
SAN DIEGO and ST. LOUIS, Feb. 28, 2013 /PRNewswire/ — In recognition of Rare Disease Day, Assay Depot and Rare Genomics Institute (RGI) today announced the winners of the first ever Rare Disease Science Challenge:
School Outreach Program Update
HNF’s School Outreach Program is having its best year yet, with nearly fifty schools visited in 2012-2013
“Fighter Mom’s” Join Forces
Lori Sames and her husband Matt formed Hannah’s Hope Fund (HHF) following their youngest daughter’s diagnosis of Giant Axonal Neuropathy (GAN) in 2008. GAN is the most rare, and one of the most severe, forms of Inherited Neuropathy.
“Fighter Mom’s” Join Forces
Is it just coincidence, being in the right place at the right time, or is it synchronicity?...
NYC bike ride to highlight rare neurological disorder
Five-year-old Aiden Kelly was diagnosed with Charcot-Marie-Tooth Disease (CMT) last April, but for the Wellesley boy, the impact of this rare disease has only revealed itself gradually.
School Outreach Program and Team CMT Kids
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.
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CMT (1)
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CMT Summit (53)
CMT Update (74)
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CMT-Connect Webinars (10)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
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)
Webinars – Home Accessibility (2)
Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (2)
Webinars – Nutrition (1)
Webinars – Pain (5)
Webinars – Podcasts (1)
Webinars – PT and Exercise (9)
Webinars – Research and Clinical Trials (9)
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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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