Those caring for patients living with CMT are invaluable members of our community. Caregivers are on the frontlines every day, helping patients manage their daily struggles and challenges of living with CMT.
These selfless people need to be recognized for their commitment and dedication, and deserve their own advocacy platform and a strong, influential voice to represent them.
That undeniable voice for the caregiver is Gary Barg.
Noted speaker, author, and publisher on caregiving issues since 1995, Gary Barg is the CEO and Editor-In-Chief Caregiver Media Group, and Founder and Editor-In-Chief of the first national magazine for caregivers, Today’s Caregiver. He is also credited with creating the original online caregiver community, caregiver.com.
But he didn’t stop there! Gary created The Fearless Caregiver Conference, uniting caregivers across the world to share their knowledge, experience, and priceless wisdom. He is a published author of two books, “The Fearless Caregiver” and “Caregiving Ties That Bind.”
His many accomplishments and awards has earned Gary the spotlight, interviewing with highly recognized media outlets such as The Today Show, Bloomberg Radio Network, Time Magazine, The Wall Street Journal, and USAToday.
Gary has been a keynote speaker for many events across the U.S including:
- The Huntington’s Disease Society of America
- Massachusetts Multiple Sclerosis Society
- The Sharing Wisdom Conference with Leeza Gibbons
- World Congress on Disabilities
- Living Longer/Living Better Conference
And Gary has Charcot-Marie-Tooth.
Although his busy schedule leaves little time to enjoy reading and traveling with his dog, Gary has been incredibly gracious to take the time to join us as one of our featured speakers at the first Patient-Centered Charcot-Marie-Tooth Summit.
Let’s hear more from Gary and what he hopes for this Summit:
HNF: Why did you choose your particular topic for the Summit?
Gary: I think it’s very important to discuss all partners within patient centered research outcomes, and that includes the interaction between caregivers and loved ones.
HNF: How has CMT affected your life?
Gary: CMT affects my life the more I age. I’m much more conscious of taking care of myself, and getting as much exercise as I am capable of handling.
HNF: What do you hope attendees take away from the Summit?
Gary: Learn all you can from the experts and providers who are all dedicated to supporting people living with CMT/IN. Above all, we should take the time to learn from one another.
HNF: Anything else you’d like to share with the community?
Gary: You are not alone. Stay involved and don’t isolate yourselves, for the sake of what you can learn from others living with CMT/IN, as well as what you can teach.
We can’t wait to hear Gary at the Summit, as he imparts his knowledge and experience to an audience eager to learn more about caregiving and CMT.
To learn more about the summit or register visit www.hnf-cure.org/cmtsummit/
Want to learn more about Gary or have a question for him?
Sometimes I think we don’t talk about our spouses, parents, friends or paid staff enough. I am still very independent, however, my husband does so many things for me. I don’t thank him enough! Actually, I feel like a spoiled brat! CMT is progressive and it sneaks up on us. We do less and less as time goes by. I was am extremely hard worker! I just wonder how my spouse feels about my decline. He would never say anything to offend me and that is why I love him so much. He’s not really a caretaker, but I feel there should be a recognition for these warriors who are behind us every step of the way.