May 21, 2017

Since my last blog post, I’ve been dealing with some personal/family issues, which isn’t very easy being so far away and with poor internet and phone connection. I’m nearing completion of re-dying the upholstery in my motorhome from the awful gray to...
May 2, 2017

May 2, 2017

I have completed two weeks of boondocking (living off the grid) in the desert area of the Coconino National Forest in Arizona’s Red Rock Country. The new solar electrical system performed as I hoped. I had to scrimp on water usage, but there was plenty of propane to...
We’re Partnering With The Mighty!

We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty’s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site. The Mighty is a story-based health...
Calling Everyone With CMT/IN

Calling Everyone With CMT/IN

CMT/Inherited Neuropathies Patient-Reported Survey Needs You to Advance Therapies HNF has launched a new Patient-Reported Research Study to advance therapies for CMT and inherited neuropathies (IN) in an effort to collect comprehensive data for a better understanding...
Tips for Living with CMT

Tips for Living with CMT

Living with Charcot-Marie-Tooth (CMT) disease can be a challenging journey. Symptoms can change over time and CMT patients must learn their strengths and limitations, and develop the support network they need throughout their personal journeys. Exercise &...
New Collaboration with the University of North Carolina  at Chapel Hill and The Jackson Laboratory Addresses Charcot-MarieTooth/Inherited Neuropathy Mutations Using Gene Therapy

New Collaboration with the University of North Carolina at Chapel Hill and The Jackson Laboratory Addresses Charcot-MarieTooth/Inherited Neuropathy Mutations Using Gene Therapy

Gene therapy represents an exciting new frontier being explored for treating a number of diseases. Currently, gene therapy is being used in a clinical trial to treat one of the rare forms of inherited neuropathy (IN), giant axonal neuropathy (GAN). Because of the...
Sunday, 9 April 2017

Sunday, 9 April 2017

Sunday, 9 April 2017 I’m settling in for a stint in the beautiful and majestic Sedona area of Arizona. I’m staying at a campsite in Oak Creek, where the bedroom window of my RV faces the water and the cactus covered hills. As with many folks, one of the draws to this...

Share This

Help us spread awareness!

Shares