My interview with Susan Ruediger of the CMT Research Foundation
In this episode, I speak with Susan Ruediger about the CMT Research Foundation and the work they are doing. Susan and her team at CMTRF work tirelessly for people living with CMT, like me! Susan shares how her organization has just ONE focus and that is- funding clinical research to help find treatments and ultimately a way to stop the progression of Charcot Marie Tooth Disease in patients. Their goal is to one day see a day when CMT is a preventable and curable disease.
Susan and I have known one another for almost ten years and I am blessed to call her a friend. I first met her when she started becoming actively involved in the support community. She has come a long way since those days! Susan is brilliant and helps to easily share how the specific projects are chosen, how and why pharmaceutical companies choose to take on the projects, and what leads up to clinical trials. Once there are trials scheduled, she explains how patients are chosen to participate, what the expectations are for those who choose to be a part of them, and why these brave people do it.
In this episode, you will learn:
-What is CMT?
-Why was the CMT Research Foundation formed?
-Who is leading the CMT Research Foundation?
-How is the CMT Research Foundation different?
-What success has been realized lately?
-Will non-profits, and therefore patients, have to foot the bill for every drug in development?
-What does this mean for the 3M people living with CMT?
The most important thing that Susan hopes that people will take away from this conversation is that there is HOPE on the horizon!
This one is for all the folks out there just like me, who are trying to find a little balance in This Wobbly Life. I hope that you will subscribe and find this episode will provide a little hope for those who may need it.
Thanks so much for listening!
Learn more about the CMT Research Foundation at www.cmtrf.org
To learn more about Stacie's story, go to www.wobblygirl.com
If you want to join me as a guest on my This Wobbly Life podcast, book a time to record on my podcast calendar! https://calendly.com/stacieking/this_wobbly_life
If you would like to reach out to me directly or ask me a question, email me at wobblygirl@wobblygirl.com
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