HNF is excited to hold the 2nd Annual Patient-Centered Summit with a focus this year on CMT/HNPP and Pain in Cambridge, MA! The Summit will be held on the campus of the Massachusetts Institute of Technology (MIT) in the Samberg Conference Center.
Registration opening soon. Click here for information more information.
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.
HNF has partnered with Inspire to provide a safe online health and wellness community in which patients, families, friends, and caregivers connect with one another for support and information.
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.
I am signing up for my VERY FIRST Five Boro Bike Tour. I need your help to find a cure for CMT. Please consider donating to my fundraising page to help me, my family and everyone living with CMT
Meet Team CMT member Bill Morgan. Bill and Liz (his wife) recently ran three races back to back in Bermuda for Team CMT.
Our Q&A for the Winter CMT Update is Andy Heck. Andy has been diagnosed with Charcot-Marie-Tooth since four and doesn’t let CMT stop him for living his life to the fullest!
Does anyone know the difference between CMT and HNPP. I have read that they come under the same umberella. I have HNPP and so do two of my sisters. We have a wide range of symptoms, with various disabilities. I need a walking stick to move about and most days I can’t walk more than a few metres. My elder sister, who was first diagnosed with HNPP, 20+ years ago, can walk around and goes on holiday two ot three times a year. I would be interested to find out about the difference and similarities in the two diseases.
Thank you.
Carol.