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?
Wheel The World is an accessibility booking platform for people with disabilities to book hotels and tours confidently.
Cannabis can be a safe and effective tool to reduce symptoms of neuropathy and improve patient quality of life.
Join us for a crash course on adaptive driving from evaluations, equipment, and certification!
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.