Summit Panelist Spotlight Matt Downing

by | Aug 14, 2016 | 0 comments

image2 (1)Participating in a clinical trial is an invaluable way to get involved in helping the research community cure Charcot-Marie-Tooth (CMT) and related inherited neuropathies (INs).

Pharnext, a French pharmaceutical company, has recently opened the first two U.S. trial sites for its PLEO-CMT pivotal Phase 3 clinical trial of its lead pleodrug PXT3003 in Charcot-Marie-Tooth Disease Type 1A (CMT1A).

Clinical trials are a vital part of the scientific research process and essential for developing therapies to prevent, treat, reverse, and cure CMT and INs.

And they need you in order to succeed.

The success of a clinical trial not only depends on the researchers, but on the participating patients. Patients armed with the knowledge of the pros and cons of joining a clinical trial will be the most beneficial to the study.

That’s why HNF is bringing this important topic to the first Patient-Centered Charcot-Marie-Tooth Summit.

And who better to lead the discussion than CMT patients who have been there?

Matt Downing, a CMT1A patient, will join HNF’s Founder and CEO Allison Moore in a panel discussion on the good, the bad, and the benefits of participating in a clinical trial.

About Matt Downing:

Matt, his sister, and his father were all diagnosed with CMT and at a fairly young age. Matt is now married and the father of four children, three of which have been diagnosed with CMT1A. Upon learning of their diagnosis, Matt became active with the MDA and various CMT groups, including the Hereditary Neuropathy Foundation.  Then, in 2010, Matt joined the HNF Board of Directors.

Currently, Matt is the Chief Marketing Officer at TriPlay, a cloud services start-up in New York City. Prior to joining TriPlay, Matt was Vice President of Marketing and Sales at SiriusXM. Prior to SiriusXM, Matt spent a number of years in Advertising and a Silicon Valley start-up that was acquired by DIRECTV.

Matt is a graduate of The University of Michigan and he enjoys golf, biking, and spending time with his family.

Let’s learn more about Matt and how CMT has affected his life:

HNF: Why did you choose your particular topic for the Summit?


I chose to participate in the panel on clinical trials because I have primary experience as a patient participating in a CMT clinical trial.

In 2009, I joined the High-Dose Vitamin C (Ascorbic Acid) Trial through the CMT Center at Johns Hopkins Hospital in Baltimore, MD. While I was disappointed that the study did not identify a viable therapy, I learned a lot during the study and I’m happy to share my observations as a patient to help improve future CMT trials.

HNF: How has CMT affected your life?


I’ve gone through six different surgeries to correct deformities and damage caused by CMT. I also saw my father spend the last decade of his life in a wheelchair because of CMT, suffering severe muscle contractures that caused him to lose control of his hands and lower legs.

Obviously I’m concerned about what the future holds for me and my family. My oldest son has already undergone three CMT-related foot surgeries and two of my other children are suffering from progressive CMT foot deformities that will likely require surgical intervention.

I hate CMT, and I’m committed to working with HNF and our partner organizations to find treatments and cures for CMT, so my children can grow up without the fear that they too might end up losing the ability to walk or use their hands.

HNF: What do you hope attendees take away from the Summit?


I want attendees to know that they are not alone in their fight with CMT. I want them to walk away with the belief that their participation helped influence patients, doctors, researchers, and industry representatives to work together to treat and cure this terrible disease.

HNF would like to thank Matt for sharing his story with our community. We are proud and honored to have him join us at the Summit!

You can connect with Matt here:



Twitter: @Matthew_Downing

Learn more on this topic

Related Blog Posts

Join the conversation

Leave a Comment


Submit a Comment

Your email address will not be published. Required fields are marked *


Join for notifications on events, campaigns, & news