This November, the #GivingTuesday movement is running #MyGivingStory, a new storytelling contest...
Blog Category
Awareness
Total posts in Category: 42
#GivingTuesday December 1, 2015: Giving Back This Holiday Season
The Hereditary Neuropathy Foundation is proud to continue our support of #GivingTuesday. Come join us on December 1st and participate in this globally recognized movement of giving and philanthropy.
Our Commitment To Charcot-Marie-Tooth Awareness Never Ends
Awareness FBWhile Charcot-Marie-Tooth Awareness Month officially comes to an end today, the Hereditary Neuropathy Foundation’s commitment to spreading CMT awareness carries on every single day of the year.
#SeptemberSelfieCMT For Charcot-Marie-Tooth Awareness Month
All you have to do is snap a selfie with #SeptemberSelfieCMT in the photo and share it on all your social media pages.
My 50th Birthday Wish: A Special Message From HNF Founder Allison Moore
I knew the only way I was going to have a fighting chance against this still unknown disease was to give CMT a voice.
What It’s Like To Live With Charcot-Marie-Tooth Disease: The Stories Of Those Who Know It Best
The study is a collection of over 80 intimate and candid interviews, painting a vivid picture of those living with CMT. These interviews brought to light a range of different experiences: from devastating and heart-wrenching, to courageous and inspiring.
Lend A Helping Hand: Join Our #ShowYourHandsCMT Social Media Campaign!
The Hereditary Neuropathy Foundation is continuing their popular Text2Give campaign this year with the theme “Show Your Hands.”
Nominate yourself or a loved one as a CMT Warrior!
HNF has featured a “CMT Weekly Warrior” for the past few months on our social media platforms. This has consisted of a photo and summary to celebrate the brave individuals living with CMT.
Pizza with a Purpose Various Locations -September 2015
Visit one of these locations on the designated day and present the flyer to your server and HNF will receive 20% off the sales that will fund CMT research.
Our CMT Inspire Community, Soon to be 2,000 Strong!
HNF has partnered with Inspire to provide a safe online health and wellness community in which patients, families, friends, and caregivers connect with one another for support and information.
New Strategic Alliance with Rare Disease Report (RDR)
We are excited to announce our new collaboration with Rare Disease Report (RDR) to increase awareness of Charcot-Marie-Tooth (CMT) among the medical community. RDR’s website, e-newsletter, and print publication offers an independent voice for the Rare Disease Community.
Allison Moore is going to be published!
HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.
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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 (10)
Upcoming Events (2)
Ways to Give (6)
Awareness (42)
Centers of Excellence (13)
CMT (2)
CMT en Español (1)
CMT Summit (62)
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 (6)
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 (47)
Gene Therapy (1)
GRIN Patient Registry (44)
HNF Team (10)
Industry (6)
Living with CMT (88)
Media (1)
Medical professionals (3)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (10)
Clinical Trials (23)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (36)
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 (24)
CMT Type – CMT1B (4)
CMT Type – CMT1X (5)
CMT Type – CMT2A (11)
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 (10)
Upcoming Events (2)
Ways to Give (6)
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