With frequent new discoveries that have the potential to advance our mission to find a cure for Charcot-Marie-Tooth, it is critical to stay informed and involved. In addition, staying connected to our community increases our strength and raises our collective voice!
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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.
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.
We are excited to announce our new collaboration with Rare Disease Report (RDR) to increase awareness of Charcot-Marie-Tooth (CMT) among the medical community. RDR’s website, e-newsletter, and print publication offers an independent voice for the Rare Disease Community.
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!
Hereditary Neuropathy Foundation (HNF) is excited to participate for the fourth consecutive year in the TD Bank Five Boro Bike Tour. It’s an honor says Allison Moore, Founder/CEO of HNF to once again be chosen as a charity partner in one of the biggest events in New York and the largest cycling event in America.