CATEGORIES: CMT Update

In Memoriam

by | Aug 19, 2014 | 0 comments

in-memoriamThe 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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Accepting Myself for Who I Am

by | Jun 7, 2015 | | 19 Comments

Growing up, I always knew I was different than my friends. I couldn’t run fast, tripped often (the scars on my knees are a reminder), was lousy at any sports-related activity, and was generally weak and uncoordinated.

The Long Road to Diagnosis Renews Dedication to Advocacy

The Long Road to Diagnosis Renews Dedication to Advocacy

by | Jun 1, 2015 | , , | 7 Comments

Growing up we called it “Steffi disorder.” My friends and family were as baffled as my expert neurologists. I had been diagnosed with typical Spiral Muscular Atrophy (SMA) as a toddler but never followed its progression; I never seemed to get weaker. My myriad of symptoms was distinctly different than anyone else’s I had ever met in a lifetime living in the neuromuscular community. I thought I might never find my true diagnosis, let alone others who share it with me.

A New Mouse Model for Charcot-Marie-Tooth (CMT2)

by | May 27, 2015 | , , | 0 Comments

We were recently informed that The Jackson Laboratory (JAX, a nonprofit biomedical research institution headquartered in Bar Harbor, Maine) had taken delivery and will be distributing a newly generated CMT-related mouse model. The new model expresses mutant mitofusin 2, a mitochondrial membrane protein involved in mitochondrial fusion and regulation of vascular smooth muscle cell proliferation.

Sixth Annual Card Party Brunch

by | Mar 10, 2015 | , | 0 Comments

On January 23, 2015 dedicated H.E.L.P. (Help Elliot Live Proud) Fund supporters participated in the 6th Annual Card Party Brunch and Boutique at Broken Sound County Club, Boca Raton, Florida. Record numbers flocked into the picturesque country club for a day filled with gourmet food, raffles, cards and a silent auction! HNF Board member Iris Adler increased this event by 50 new faces this year!

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