Connections Create a Powerful Force

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

CARRE (Charitable Alliance for Restaurant & Retail Executives) was established to provide leadership through charitable giving while building stronger relationships and bonds within CSP Business Media’s conference community. For each of our large conferences, Convenience Retailing University, Restaurant Leadership, FARE (Foodservice at Retail Exchange) and Outlook, CSP names a charity for which we raise funds.

Primary support is to non-profit organizations, including, but not limited to, those that assist others suffering from disability, disease, illness and other hardships, as well as organizations that promote the development of programs that extol the virtues of humanitarian leadership.

These charities, with which someone in our business community is affiliated, are traditionally brought forth via conversations with operators and suppliers. These charities often have a tie to people for personal reasons, such as someone stricken with a disease for which the charity provides support in some way. Over the years, CSP and the communities we serve in the restaurant segment, as well as the convenience & retail petroleum segment, have raised more than $1 million to help causes including Duchenne Muscular Dystrophy, Stand Up to Cancer, Juvenile Diabetes, Feed My Starving Children, Waste Not and Fragile X, among others. Many of our selected charities focus on diseases related to children, but not always.

In conjunction with our forthcoming Outlook Conference, which will occur Nov. 9-12 in Scottsdale, Ariz., we selected to support fundraising for a disease called Multiple System Atrophy, or MSA.

What It Is

MSA is a neuro-degenerative disorder affecting multiple body systems. MSA is associated with the degeneration of nerve cells in specific areas of the brain. This cell degeneration causes major symptoms of any combination, including ataxia (loss of balance and coordination), severe low blood pressure leading to dizziness or fainting when standing, speech and swallowing difficulties, sleep disorders, breathing problems, other system failures, and rigidity and tremor similar to Parkinson’s Disease. The cause of MSA is unknown, and no specific risk factors have been identified. About 55% of cases occur in men, with typical age of onset in the late 50s to early 60s.

As you may have read in Paul Reuter’s column earlier this year [CSP—March ’13, p. 10], or an online story about Huck’s fundraising efforts in May, two members of our convenience retailing community are battling MSA: Rex Griswold of Nestle Waters North America; and Tom Gillard, formerly of Tropicana, QTG and MET-Rx.

Our MSA fundraising effort differs from previous efforts. We began our effort with the support of Nestle Waters in making a video to share with everyone. You can view the video at www.cspnet.com/msa.

Given the magnitude of this disease, the fact that there has been little to no research into the cause and possible treatment or cure, CSP determined it was necessary for us to take a very different approach to our fundraising. With our community’s help, we are working to put this disease on the map and also chart a course for helping Rex, Tom and others.

Tom’s Story

In a recent autobiography by Tom, he shared that “Before his diagnosis, [he] spent 29 years in the food and beverage industry, with the last 19 years devoted to the convenience store channel of trade.” See the story at www.outlookconference.com.

Tom spent 10 years in the convenience store division of Tropicana Products Inc., which was later acquired by PepsiCo. During this time, Tom was working in the area of national accounts management. He later moved to NBTY and focused on selling the MET-Rx product in the convenience channel. Tom’s hard work and leadership brought him great success during this time as the company introduced and achieved mainstream distribution of its own line of nutrition bars, which played a major role in bringing MET-Rx to a category leader position within the industry. Tom was on top of his game, and on top of the world, but his health soon took an unfortunate turn for the worst.

In August 2008, while on vacation in Florida with his three daughters, Tom noticed that he was having trouble walking after a day on the water. Tom spent his childhood by the ocean in Ireland and on the Jersey Shore, so he shrugged off his troubles as he and his daughters made their way back to their hotel. It wasn’t until later in the evening that Tom, recalling his troubles at the waterfront, nervously approached a long flight of stairs leading down into the hotel dining room. Tom thought to himself that his feelings were strange, and diagnosed himself with an ear infection.

Soon after this experience, and after visiting with seven of the best neurological hospitals in the country (Johns Hopkins, Mayo Clinic, NIH, UCLA, etc.), Tom was diagnosed with MSA. The diagnosing doctor told Tom that there was no cure for MSA and that little could be done on his behalf.

Rex’s Story

Rex Griswold is an industry and personal friend to many. He has been with Nestle Waters North America since 1992, most recently leading the convenience retailing sales force as vice president of sales.

In September 2011, Rex noticed some different balance issues, such as spilling the coffee he was carrying and wavering on his bicycle when riding, which he enjoyed regularly with a group of friends. Between then and February 2012, Rex further noticed that his speech had started to slur and his handwriting deteriorated, becoming almost illegible. Rex decided to use his yearly physical at Cooper Clinic in Dallas to get answers.

The night before, Rex wrote down all the things that were wrong or different from his physical the year prior. Rex left the appointment with a most likely diagnosis of a stroke and a laundry list of to-do’s and doctors to see. After some tests ruled out a stroke, Rex went to a local neurologist, who told him that he thought he had ataxia, but he would need to see another neurologist in the practice who specialized in movement disorders. He prescribed a few tests before the visit with the specialist, including an MRI. The neurology specialist said the MRI showed an atrophy of the cerebellum, and confirmed the ataxia. She then referred Rex to another specialist and ran many tests, including one to determine which type of ataxia he had and if it was hereditary or not. It came back negative for hereditary ataxia. On June 1, 2012, Rex had an appointment at Columbia Hospital in New York with a specialist in movement disorders. After a three-hour appointment, he was given the diagnosis of MSA. A later appointment at Yale confirmed
that diagnosis.

Over the past year, Rex’s life has taken on new meaning and direction. Still working with Nestle Waters as vice president of strategy, Rex interfaces with team members and clients, but his travel schedule has been greatly curtailed because travel is quite taxing. Nestle Waters employees and management have not only been supportive of Rex, but they have also taken a very active role in our CARRE efforts, holding fundraisers throughout the country and spreading the word of the plight of their colleague via social media.

Rex has also become very active with the MSA Coalition. One never knows where life will lead, and embracing life positively has always served Rex well. This is no different; Rex believes he has a purpose. After a recent move to Texas to be closer to family, Rex is now focused on the purpose of raising awareness about MSA. “At some point, I won’t be able to get around at all, so while I can, I will do all that I can,” he says

In January 2013, Rex received the Nestle Waters North America President’s Award. As shared by Kim Jeffrey, president & CEO of Nestle Waters, “Your accomplishments have been critical to our success, but more important to all of us is how you have done it. Unfailing humor, candor, mentoring, real friendship mixed with [being a] role model—the kind of behavior which inspires people. Believe me when I tell you, people are inspired by Rex Griswold.” This sentiment has been echoed by many industry members and those who know Rex from outside the industry as well.

Making Connections

Consultant Debbie Wildrick worked with Tom Gillard when he was in the industry and kept in contact with him once he retired after the diagnosis of his disease. While attending a NEW (Network of Executive Women) event in 2012, Debbie heard Kim Jeffrey speak. After his speech, she approached Kim to reintroduce herself, having met him while she worked at 7-Eleven years prior. While she was speaking with Kim, Rex’s name came up, and Kim told Debbie about Rex’s recent diagnosis.

“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.
—Ryan Barlow contributed to this article.

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