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How do we honor the inevitable grief that comes with disability and establish healthy boundaries...
Kenneth Raymond provides an overview of why sharing CMT symptoms in GRIN is so important!
Charcot-Marie-Tooth disease is one of several hereditary neuropathies that affect the peripheral nervous system. CMT affects about 1 in every 2,500 people, making it one of the most common inherited neurological disorders worldwide.
HNF has partnered with Rarebase, a public benefit precision medicine company that has screened a large library of FDA approved small molecules to identify candidates for various types of CMT. Their tech-enabled drug discovery platform is called Function™. There are many published discoveries on the genetic cause of many types of CMT, including an understanding of the basic mechanism of disease and potential targets for FDA-approved drug repurposing. It is this understanding that allows HNF and Rarebase to target the genetic root cause of CMT.
How do we know if our symptoms are Charcot-Marie-Tooth Disease related, and how can we drive research to better answer this question?
HNF, in partnership with Rarebase, is leading the charge in the first-ever research initiative to tackle multiple types of CMT in one project using its tech-enabled drug discovery platform called “Function.”
Clinical Trial Update for SORD Deficiency – Applied Therapeutics – Dr. Shoshana Shendelman
Without your participation, researchers won’t have the essential patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies. In addition, as GRIN grows, we gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies.
The Social Security Administration (SSA) doesn’t make it easy for those with CMT to get the Social Security Disability Benefits they deserve.
Could you be 1 of the estimated 3300 patients in the US with the gene causing SORD Deficiency?
I just found this site is there a replay of this webinar. If so will you please email me the link and the upcoming webinars.
Hi Gloria, We do not have a replay of the webinar. We will have future webinars so check back often.
I have HNPP. I found out early last year that there’s a Doctor in Tennessee that has been doing research on HNPP and has linked it to CMT. I still have all his research notes that brought he and his colleagues to this conclusion.
Hi I need to get disability for my CMT and other back issues. How difficult is it to get?
Best advice…go through a disability advocacy organization not an attorney. I tried on my own for over a year then found an advocacy group that specializes in only helping people get approved. Three months and two Dr appointments later I was approved without any stigmas…actually a very validating process. Their fee was 20% of any back payment but nothing going forward. Well worth it! Best wishes!
I hired an attorney that specializes in SSDI, between him and w/the help of my Dr. it took approximately 6 months to be approved and receive my 1st check.