CATEGORIES: CMT Update

In Memoriam

by Courtney | Aug 19, 2014 | 0 comments

The HNF family has lost two great people this summer: Franklin G. Downing Sr. (father of board member Matthew Downing) and George G. Gatta (father of board member Kathleen Zappola). We
would like to honor these two individuals as they have provided us with great leaders in our board members. It is always hard to say goodbye to loved ones but we know they are with us daily as we continue our quest to cure Charcot-Marie-Tooth. HNF thanks all those that donated in memory tosupport the TRIAD Research Program.

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Top 10 Ways to Spread CMT Awareness

by Courtney | Jan 2, 2017 | CMT Update | 0 Comments

HNF HAS COME UP WITH TEN WAYS YOU CAN DO YOUR PART AND HELP ALL OF US SPREAD CHARCOT-MARIE-TOOTH AWARENESS:

Thank You to Everyone Involved with PLEO-CMT Trial!

by Courtney | Jan 2, 2017 | CMT Update | 2 Comments

a drug candidate has reached Phase 3 clinical trial, the critical last phase before potential FDA market approval

HNPP Study Available for HNF Members

by Courtney | Dec 19, 2016 | CMT Type - HNPP, CMT Update, Faces of CMT - HNPP Fund | 27 Comments

This study, which aims to uncover the rather unrecognized symptoms of Hereditary Neuropathy with Liability to Pressure Palsy (HNPP)

Patient-Centered Summit for CMT/HNPP: Cambridge, MA November 3, 2017

Patient-Centered Summit for CMT/HNPP: Cambridge, MA November 3, 2017

by Courtney | Nov 25, 2016 | CMT Update | 1 Comment

HNF is excited to hold the 2nd Annual Patient-Centered Summit with a focus this year on CMT/HNPP and Pain in Cambridge, MA!

10 Ways Participating In GRIN Helps Support CMT/IN Research

10 Ways Participating In GRIN Helps Support CMT/IN Research

by Courtney | Jul 14, 2016 | CMT Update, GRIN Patient Registry | 0 Comments

HNF’s Global Registry for Inherited Neuropathies (GRIN) is one of our initiatives that supports our commitment and dedication to developing treatments and discovering cures for CMT and other INs.

About The Summit Venue: 3 West Club, New York City

by Courtney | May 26, 2016 | CMT Summit, CMT Update | 0 Comments

The Hereditary Neuropathy Foundation has selected historic 3 West Club to hold the first Patient-Centered Charcot-Marie-Tooth Summit on October 6, 2016.

Summit Speaker Spotlight: Gary Barg, The Fearless Caregiver

Summit Speaker Spotlight: Gary Barg, The Fearless Caregiver

by Courtney | May 25, 2016 | CMT Summit, CMT Update | 1 Comment

Those caring for patients living with CMT are invaluable members of our community. Caregivers are on the frontlines every day, helping patients manage their daily struggles and challenges of living with CMT.

Applying for Disability with Hereditary Neuropathy or CMT

Applying for Disability with Hereditary Neuropathy or CMT

by Courtney | May 19, 2016 | CMT Update, Legal Rights and Benefits | 74 Comments

Learn how you can apply for disability with Hereditary Neuropathy or CMT.

Top Ten Ways Participating in GRIN Helps Support CMT/IN Research

Top Ten Ways Participating in GRIN Helps Support CMT/IN Research

by Courtney | May 19, 2016 | CMT Update, GRIN Patient Registry | 0 Comments

HNF’s Global Registry for Inherited Neuropathies (GRIN) is one of our initiatives that supports our commitment and dedication to developing treatments and discovering cures for CMT and other INs.

Meet Molly: A True CMT Warrior

Meet Molly: A True CMT Warrior

by Courtney | Apr 6, 2016 | Bike New York, CMT Update, Living with CMT, Team CMT Members | 2 Comments

Kassandra generously shared the story of their friendship with us: I met Molly while living abroad in Tel Aviv, Israel. She just moved there and reached out to me to write for a foodie website I was running at the time.

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