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.
The first disease community to receive a therapeutic gene to the spinal cord for an ultra rare inherited neuropathy is Giant Axonal Neuropathy (GAN). Congratulations to Hannah’s Hope Fund (HHF), a 501(c)3 public charity, which has driven this collaborative research in less than six years. Six million dollars has been raised to date to fund pre-clinical and clinical research on this rare disease.
To raise awareness and fund research for CMT6 in Webster, New York!
A movie script could not play out like this. There are very few occasions when a rare disease patient becomes the topic of a story that is truly uplifting. Often the stories are tragic or disheartening. That was not the case, however, with CMT patient Kim Goodsell.
One of the ways that some CMT patients first become aware of their disease is when they are given a drug treatment for another disease. This is termed chemotherapy-induced neurotoxicity. Drugs such as paclitaxel and the vinca alkaloids that are widely used in cancer treatment cause severe peripheral neuropathy and in some patients this exacerbates CMT, revealing it perhaps for the first time.
My name is Courtney Hollett, Fundraising Coordinator at the Hereditary Neuropathy Foundation. This time of year I count my blessing daily and wanted to share with you a Q&A session I had with a new supporter of HNF. Kara, like myself has many family members affected with CMT and I reached out to her to share her thoughts and advice about how to “support” a friend or family member that’s affected with Charcot-MarieTooth.
Hereditary Neuropathy Foundation (HNF) is pleased to announce the creation of a joint venture to develop drug candidates for the treatment of Charcot-MarieTooth (CMT) Disease with BioPontis Alliance for Rare Disease.
In June 2013, HNF made the important decision to refine the organization’s mission. We now place more importance on new initiatives that take our research discoveries and translate them to the next phase in the drug discovery process.
We divide our research initiatives into 3 areas:
We at HNF are so proud of the accomplishments of those scientists we fund and are asking you to please continue to support our efforts. Our Therapeutic Research In Accelerated Discovery (TRIAD) program is a proven collaborative model in the drug discovery process.
My name is Elizabeth Francisco and I am a graduate student from the Genetic Counseling program at the University of North Carolina Greensboro. I am inviting you to participate in a research study. The goal of my study is to learn more about the experiences of people with Charcot-Marie-Tooth (CMT) with genetic counseling and genetic testing. Adults with CMT and parents or legal guardians of someone of any age who has a diagnosis of CMT are eligible to participate
HNF introduces our latest initiative to reach millions of people worldwide and raise money for CMT research using Text2give.
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.