Upstate NY CMT group TGIF Awareness Fundraiser 2010 photo Paula Bossert
The Upstate NY CMT Support & Action Group was started in April 2010 by Melinda Lang to offer support, resources and information for those living with CMT. The goal of our support group is to inspire hope and perseverance, and create an opportunity to socialize with others facing the challenges of CMT.
Also, to let others know about the CMTA’s promising research initiative- STAR (Strategy to Accelerate Research™). We are action-oriented (community awareness, education, fundraising).
We generally meet every other month on Saturday at 10:30 at the East Greenbush Community Library at 10 Community Way, East Greenbush, NY
Christine’s Blog: Grace Lines
- I am an artist, former special education teacher, current medical office receptionist and devoted cat mom!
- How I deal with daily frustrations as a disabled adult. And most of all, how I’ve managed to develop not only an inner grace, but also a sense of humor that helps me face these daily challenges. What disability do I have, you may wonder? Well, I have a neuro-muscular disorder called Charcot-Marie-Tooth Syndrome which effects approximately 150,000 Americans…CMT for short! Don’t feel bad if you’ve never heard of it–as disabilities go, it isn’t well known (despite being so common,) and often goes undiagnosed. My CMT symptoms started when I was 13, and I wasn’t diagnosed until I was 25. I personally think we need a yearly telethon with a funny/well known personality as host, but we haven’t gotten to that point yet!
BensFriends Online Community Helping People With Rare Diseases
Ben Munoz is a student, social entrepreneur, and patient advocate. In 2006, Ben Munoz suffered a life-threatening brain hemorrhage. He created an online support community so that he could connect with other patients. The support he received, and later, gave within that community led to the founding of Ben’s Friends, a network of patient communities dedicated to providing support for patients of rare diseases like himself.
“I originally started the first patient community because I desperately needed to connect with someone who knew what I was going through (recovering from stroke). After I got healthy, I realized patients of other rare diseases deserved the same support. So some friends and I started creating more patient communities.” Ben Munoz
The ultimate goal of BensFriends.org is to provide an individual support community for EACH of the 1000+ rare diseases known to medicine.
Visit the CMT community: http://www.livingwithcmt.org/
In 1999, Gretchen Glick founded CMTUS, an e-network for patients suffering from a genetic peripheral neuropathy, Charcot-Marie-Tooth disease (CMT), which leads to muscle wasting, weakness and nerve pain. Gretchen saw the need for people with CMT to connect worldwide to share personal stories and discuss strategies to manage symptoms including pain, weakness and fatigue. Gretchen’s CMTUS website also focusses on research and answering questions, helping people daily with her upbeat, positive attitude.
The Neuropathy Support Network is another resource for those with CMT and any other form of neuropathy. The purpose of the Neuropathy Support Network is to provide volunteer support, guidance, counseling and information to neuropathy patients by supporting the mission of The Neuropathy Association, Inc.
If you suffer from Neuropathy, or have a friend or loved one who does, visit: http://www.neuropathysupportnetwork.org/
The purpose of the Coping with Chronic Neuropathy DVD is to help others reach out, find answers, spread hope and raise funds for neuropathy research.
Discussed is the power of faith, increasing your neuropathy knowledge, getting and giving patient support, and learning to adapt to the changes neuropathy brings to lives – while remaining focused on getting help for your neuropathy.
- Advocacy and Outreach News (cmtnyus.wordpress.com)
- Governor Letter requesting Proclamation for CMT Awareness Month (cmtnyus.wordpress.com)
- Yes, that hurts! (cmtnyus.wordpress.com)
- Patient Voices: Obscure, and Often Devastating (nytimes.com)
- Rare-Diseases Project Hopes for Diagnostic Tool for All Diseases by 2020 (scientificamerican.com)
- Maryland’s Patient & Family Conference Attracts International Audience (cmtnyus.wordpress.com)
- Rare Disease (aleislas.wordpress.com)
- I Knew This was going to Happen (cmtnyus.wordpress.com)