On March 19th, at the MDA Clinical and Scientific Conference in Dallas, TX, Dr. Cornett will present exciting findings from the wearable sensor study conducted in collaboration with HNF’s partner, BioSensics. This innovative research highlights the potential of wearable technology to transform how disease progression and therapy effectiveness are measured for individuals with CMT.
Looking for new patients to participate in the BioSensics Wearable Study. Join us in Nashville, TN, April 24-26th.
HNF has featured a “CMT Weekly Warrior” for the past few months on our social media platforms. This has consisted of a photo and summary to celebrate the brave individuals living with CMT.
Visit one of these locations on the designated day and present the flyer to your server and HNF will receive 20% off the sales that will fund CMT research.
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.
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.
HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical...
The Neuropathy Association and the Hereditary Neuropathy Foundation are pleased to announce that we will be co-hosting a Facebook Chat on July 24th that focuses on better understanding the diagnosis, care and treatment of hereditary neuropathies.
Read about how this CMT patient endured seven surgeries over the past dozen years to cope with the effects of CMT.
In mid-October 2012, I had the opportunity to interview Bernadette Scarduzio (Bern). She is a lovely young woman who suffers from Charcot-Marie-Tooth
The women: Lenka Vodicka of California, Michele Kekac of Connecticut, Esther Lejbovitz of New York and Nicole Burggraaf of Cananda, post to the site whenever they feel they have something to share.
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