Connections Create a Powerful Force

How CARRE is trying to change the future for those with MSA.

By
Kay Segal, Senior vice president, trade relations and conference education

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“Kim’s description of Rex’s health problems immediately hit me, and I knew that Rex had the same disease as Tom Gillard,” Debbie says. She immediately reached out to Tom upon her return from the conference, which then led to Tom and Rex connecting. Tom has assisted Rex with information, connections and support, and Rex is now supporting Tom with his fight against the disease.

During a flight earlier this year, Kim Jeffrey sat next to a man by the name of Jeffrey Trent. Neither Trent nor Kim tends to converse during flights, preferring to stay focused on work, reading and a few moments of quiet. However, their seating arrangement and conversation dramatically altered the course for the CARRE effort against MSA.

Something caused Kim to open a conversation with his neighbor for this flight. About three-fourths of the way through the flight, Kim and Jeffrey asked each other about their work. Jeffrey shared that he was a doctor and president of TGen, the Translational Genomics Research Institute, based in Phoenix. Kim shared Rex’s story. Trent said he did not personally work on MSA, but he knew some of the many researchers at TGen could provide insight. Trent’s first patient at TGen the next morning was there for a discussion about MSA.

With the use of electronic media, video links and the power of many, the word has spread beyond our conference, which has yet to occur. We have, for the first time for CARRE, raised significant funds prior to our event. On June 27, 2013, the CARRE Foundation, with the generous support of Nestle Waters North America, early efforts by companies such as Huck’s and many corporate and individual donations, issued a $100,000 grant to Translational Genomics Research Institute (TGen) to initiate scientific research for MSA in the “Quest to Cure MSA in Honor of Rex Griswold.”

What You Can Do

We have only begun the search for answers, treatment and cure. The funding of this first research project will yield insight, but we know there will be a need for more—much more. Our industry is filled with caring individuals who share stories and insights. Connections and professional reasons bring us together, but personal interaction builds the foundation and power of success on both personal and professional levels.

If you’re not already planning to attend Outlook, please come! Both Tom Gillard and Rex Griswold will be with us. Reconnect or connect for the first time and be inspired by these individuals of courage. And the business agenda is spectacular too.

And give! Help us continue the fight against Multiple System Atrophy. Help us and help others via the power of many. Share this story with your network of friends, building more awareness, more outreach and potentially more support.

To support our efforts to find a cure for MSA, please contact Ryan Barlow, coordinator for CARRE, at (480) 337- 3429. You can also email him at rbarlow@cspnet.com or use this donation link:  www.cspnet.com/donate.

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