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?
Joey’s family has a history of Charcot-Marie-Tooth, and he decided to get tested at the end of 2019. He learned at the age of 23 that he had CMT-1B and needed to adapt his way of life so that he could continue performing.
Trying to get a genetic confirmation of CMT can be overwhelming, and you might not have access to healthcare providers who are familiar with all the choices out there.
Hear from Allison Moore, Founder/CEO of the Hereditary Neuropathy Foundation about the past, present and future or research.
Setting healthy boundaries is part of self-care and self-respect. It is being assertive without the need to be aggressive. Healthy boundaries can help us define our uniqueness and our core. Boundaries are not just about getting what we want. It’s about getting to live our lives on our own terms.
What are the key ingredients and practices for raising empowered kids with CMT? Dr. Ficchi is a licensed therapist with specialty areas of focus on individuals with disabilities.
When it comes to education & CMT there are many ways we can advocate for and empower our children and young adults.
What are the key CMT milestones, markers, and interventional therapies to consider when raising a child with CMT?
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.
Thanks,
Courtney
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.
Good Luck.