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....
Cholesterol And Your Health

Cholesterol And Your Health

According to the CDC, about one in every eight American adults have high levels of total cholesterol. High cholesterol is a major contributor to heart disease. While high cholesterol levels remains a significant health issue for many Americans, it’s important to...