The strength of the CMT community depends on the unwavering commitment of its members. From patients, to caregivers, to researchers and HCPs, we are all in this together to help raise awareness and funds to develop treatments and find a cure.
HNF welcomes CMT community member Kristin Gelzinis, who will participate in the much anticipated panel discussion on exercise and the CMT patient.
Let’s hear more about Kristin in her own words:
It’s taken me a long time to get where I am today from when I was initially diagnosed with CMT. I have my Bachelors in psychology and Masters in Social Work, and hold my license in clinical social work after working in EMS for nearly ten years. I was initially in nursing school until a doctor informed me that my CMT diagnosis would prevent me from being on my feet all day.
I started out depending on a wheelchair to get around. My legs were weak, my bones were deteriorating, and I was listening to my doctors making sure I didn’t fall or hurt myself further.
After years of complying, I decided to start listening to my body instead. I started out slow, taking short walks with my son and kept pushing myself to do something a little more, go a little further. I tried wheelchair softball, kayaking, and swimming since my arms were still relatively unaffected by the disease.
I started taking my son to more places and as his face lit up, it pushed me to continue to do more. I took him on bike rides, joined martial arts, and began advocating for others with disabilities. Currently, I work with children with disabilities as well as adults diagnosed with mental health disorders.
I am an administrator for ‘CMT Stand By Me’ and ‘CMTartists.’ We currently have over 1000 members from all over the world involved in our groups. We have also started CMT-Connect, which a wellness/support group for those who have CMT and their caregivers in New York City, Long Island, and Rochester. I’ve been co-moderating the workshops on LI.
HNF: Why did you choose your particular topic for the Summit?
I choose my topic because I strongly believe that I would still be in a wheelchair if I didn’t push myself to be more physically active. My activity level isn’t for every CMT patient. I understand CMT is a progressive disease. But sometimes we have to get out of our comfort zones to see what we are still capable of.
HNF: How has CMT affected your life?
It’s always been a struggle to maintain balance in my life: the constant changes with the progression of CMT and my drive to do more for my family and the CMT community. I will be able to bring a unique perspective to the discussion as a patient who’s been there.
HNF: What are you most looking forward to at the Summit?
I can’t wait to connect with others during the Summit. I’m interested in listening to their stories and excited to share mine. I’m curious about the latest CMT research and look forward to having all of our voices heard by the professionals.
We’re excited too!
Be sure to join the discussion and learn more about exercise and CMT at the Summit.