Meet Stefanie Sacks CMT Summit Keynote Speaker

Meet Stefanie Sacks CMT Summit Keynote Speaker

The Hereditary Neuropathy Foundation is proud and privileged to introduce Stefanie Sacks, our keynote speaker at the first Patient-Centered Charcot-Marie-Tooth Summit on October 6, 2016 in New York City. Stefanie Sacks, MS, CNS, CDN is a Culinary Nutritionist, author,...
Dorothy J. Fairman Memorial Travel Scholarship

Dorothy J. Fairman Memorial Travel Scholarship

Dorothy J. Fairman Memorial Travel Scholarship for HNF’s 2016 Patient-Centered CMT Summit Dorothy J. Fairman, 70, passed away on Wednesday, October 28, 2015 in Tucson, AZ. She had Charcot-Marie-Tooth disease Type 1A and died of respiratory failure secondary to CMT....
CMT and Exercise

CMT and Exercise

HNF wants to help our Inspire members get answers to questions related to Charcot-Marie-Tooth. One topic that has been addressed is exercise, stretching, and working out.  Some CMT patients have reported yoga and water aerobics have been beneficial exercise for CMT....
What Do We Mean By “Patient-Centered”?

What Do We Mean By “Patient-Centered”?

HNF is planning the first ever Patient-Centered Charcot-Marie-Tooth Summit taking place on October 6, 2016 at the 3 West Club in New York City. But, what do we mean by the term “Patient-Centered”?  “Patient-Centered” refers to the meaningful involvement of...
Q&A With Summit Attendee Jim Matthews

Q&A With Summit Attendee Jim Matthews

HNF: Tell us about yourself? Jim: My name is Jim Matthews and I’m a Licensed Clinical Social Worker in Indiana. I’m 59 years old and will be celebrating my 30th anniversary with my wife Cathy this year. We have two adult children. One lives with us and the other lives...
Meet CMT-Connect Participant Karen Halber

Meet CMT-Connect Participant Karen Halber

HNF: Hello Karen! Please tell us a little bit about yourself… Karen: I just turned 53 and I’m a single parent to a wonderful 13 year-old boy named Matthew. We both have Charcot-Marie-Tooth disease. I was diagnosed with CMT at age 5, and I had Matthew tested at...
CMT Community Member Spotlight: Estela Lugo

CMT Community Member Spotlight: Estela Lugo

People who live with progressive and rare diseases such as Charcot-Marie-Tooth can often feel isolated, forgotten, and powerless. HNF is determined to bring the power back to the patients! CMT-Connect™ is our new patient-focused initiative providing educational...
HNF’s New Accomplishments!

HNF’s New Accomplishments!

10 REASONS TO DONATE TO ALLISON MOORE’S 2016 BIKE RIDE CHALLENGE Check out how far we’ve come since the last TD Bank Five Boro Bike Tour in 2015: Collaboration with Pharnext Biopharmaceutical: Working together on the first potential treatment for CMT1A....