CSP Magazine

Industry Views: Fight Continues Until We Win the Battle

There is no cure for Multiple System Atrophy (MSA), a deadly disease that afflicts two industry veterans: Tommy Gillard, formerly of Tropicana, QTG and MET-Rx; and Rex Griswold of Nestlé Waters North America. Before we began raising funds and awareness, there was no coordinated research eff ort to find a cure.

From March 2013 through November 2013, our industry, through the CARRE Foundation, raised more than $300,000 for TGen (Translational Genomics Research Institute) and the MSA Coalition to commence much-needed research into MSA. Fast-forward to 2015, and you’ll find we have made progress toward finding that cure. But there is much more to do and time is of the essence. The simple fact is that this disease does not stand still; it draws life from its victims every hour of every day.

An Update on Our Friends

Tommy is getting ready to move to Marco Island, Fla. No more northern winters for him. All things considered, he is doing pretty well. In his words, “My life is as good as it can be. I have two daughters in college and my youngest is a sophomore in high school and one heck of a lacrosse player.

“I gave up my cane and use a Rollator walker to get around now. I still exercise twice a day, keep a positive attitude and eat right.”

Rex now lives in Dallas. His superior spirit has never been better, but his symptoms have progressed significantly, including moving from a cane to a walker and now a wheelchair. Rex recently shared, “I just can’t walk. It’s hard to speak.” Rex and his family continue to persevere. With his wit intact, Rex attends therapy and family endeavors and works at the Nestlé Waters office in Dallas two to three days per week. Rex and his family also attended the Winsight 2015 FARE Conference in Nashville in conjunction with MSA fundraising efforts.

He is also very involved with the Rex Griswold Foundation, a 501c3 nonprofit organization founded in June 2014 with a simple mission: to raise awareness and funds for research on MSA, with the goal of treating and curing this terrible disease. With the support of Nestlé Waters North America, 100% of the funds raised by his foundation (rexgriswoldfoundation.org) will fund research for the foreseeable future.

Through the industry’s initial fundraising support, a further milestone has been achieved: In June 2015, the National Institutes of Health (NIH) awarded a two-year, $250,000 grant to TGen to advance MSA research.

The grant will enable TGen to expand its research to identify the genes that cause MSA and discover targeted treatments.

This grant was awarded based on initial findings from the MSA Genome Project at TGen, funded by the CARRE Foundation through a $100,000 grant in July 2013 from the funds raised by our industry. It’s something anyone who donated and everyone in the industry should be incredibly proud of.

During the CARRE-funded pilot project, TGen sequenced the genomes of MSA patients and their families. TGen identified genes and variants for further study and established a registry that already has 87 patients. The NIH grant will help move the ball forward, and we have other initiatives underway to help us speed up momentum.

Get Involved

#DanceForMSA is a fun social media challenge started by the Rex Griswold Foundation to raise awareness and funds for MSA. “Through dancing, the universal and powerful element of human mobility, our goal is to raise awareness and fund desperately needed research to help cure MSA,” says Maria Barton, executive director of the Rex Griswold Foundation. Visit the website and watch our launch video at danceformsa.org. Then have fun dancing—moving any way you desire. Pledge, post and nominate others to join the fight. Maybe one department or region of your company can challenge another! Don’t forget to tweet to share your experience and nominate others, and use the hashtag #DanceForMSA.

At the NACS Show, the Rex Griswold Foundation and The Lou Ruvo Center are partnering with c-store industry vendors for The Party at NACS! (thepartyatnacs.com), headlined by Darius Rucker and Flo Rida. Great food, great entertainment and a great cause form the basis for this eff ort. Check out the website to see if tickets are available so you can party with a bigger purpose.

Finally, March 2016 is National MSA Awareness Month, and we hope many c-stores will raise money for MSA research via the Rex Griswold Foundation. We know many operators incorporate fundraising at the unit level; please consider an effort for MSA. Contact Tom Hipwell, president of the Rex Griswold Foundation, for more information about how you can obtain purple MSA wristbands or partake in a “Round up at the register” campaign. Email  info@rexgriswoldfoundation.org for other tools to assist in your endeavor to raise awareness and funding for needed MSA research.

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