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Vicki Pollyea – October 27, 1956 – September 15, 2019

When I first met Vicki over 12 years ago, she was the leader for the Tampa CMTA/MDA branch, the largest CMT group in the country. We hit it off immediately, and I knew she’d be a forever friend, and I was right. Over the years, Vicki has played a variety of different roles at the CMTA, all in which she’s poured her heart and soul. When I wrote this article, Vicki was recuperating from radiation therapy for recurrent lung cancer, and from her hospital bed, she continued to moderate the CMTA’s Facebook Group, giving fact-based answers and helping other find resources, comfort and support.  

Born into a family with CMT1A, Vicki grew up in Tampa Bay, Florida. Her CMT prevented her from riding a bike and running, but she could swim and catch needlefish to sell for bait to tarpon fishermen.

After undergoing a lot of physical therapy in her youth, Vicki decided to get a degree in occupational therapy from the University of Florida. She worked as a pediatric occupational therapist until her  CMT forced her to change her life path. Undeterred by this setback, and soon on full disability, Vicki became a CMTA branch leader and neighborhood activist. She was part of a former Mayor’s Neighborhood Task Force and helped draft Tampa Bay’s tree-protection code. Vicki was also president and one of the founders of Bayshore Gardens Neighborhood Association, where she and her husband, Archie Giannella, live in a 1921 bungalow they restored. Her hobby was fishing, a passion she and Archie shared.

Since 1985, Vicki had more than two dozen orthopedic operations. Over time she became more homebound, but turned to the phone and the computer on CMT chat rooms. Soon thereafter, she stepped up as a CMTA Branch Leader.  Her mantra?  Vicki often said, “I cannot control the things that happen in life, but I can control my attitude about the things that happen.”

True to her word, Vicki valiantly battled lung cancer, and the most recent occurrence was found to be inoperable. After 6 weeks of intensive radiation therapy, pneumonia set in, delaying her progress. Yet, whenever she had a chance or a little extra energy, she continued to spread CMT awareness and moderate the CMTA Facebook group, sharing her lifelong experience and knowledge of CMT. 

In addition to her sister, Vicki has two cousins who live in New Zealand and also have CMT. She knows that all the research currently underway will make a difference in their lives. Vicki reflected, “I don’t know how much longer I’ll live, but Archie will be by my side. It teaches you to live in the moment, to tell the people around you that you love them. You never know what will happen tomorrow.”

As a person dealing with Charcot-Marie-Tooth condition, she was always 100% committed to the community, supporting the newly diagnosed, helping find resources for those coping with CMT as well as increasing awareness of this condition. These have been her most meaningful life goals. Vicki believes that increasing Awareness + Raise Research Funds = Treatment/Cure. And I could not agree more.

Vicki Pollyea, your selfless volunteerism has made a tremendous difference in the world of CMT and beyond. You’ve touched more people than ever you could imagine and we are eternally grateful for your relentless drive and motivation to make positive change in the here and now.

On behalf of the CMTA board, staff and community, I want you to know that you are deeply appreciated and truly missed. Your spirit lives on and there is not a day that passes that I do not think of you!

True to form, here is one of Vicki’s favorite quotes from Cornel West: “I’m a militant for tenderness. Justice is what love looks like in public, just like tenderness is what it looks like in private. Love is a steadfast commitment to the well-being of others.”

As a post script, Jeana Sweeney and I were invited to speak at Vicki’s Cerebration of Life. The room was overfilled with people who wanted to honor Vicki. Vicki was so loved and admired by family, friends, local community advocates and CMTA supporters. It was a beautiful ceremony, filled with tears, laughter, and reminiscence.

We’ve lost a CMT warrior extraordinaire, but in her name we will fight on to cure CMT, which was a big part of her life’s work. She will always be remembered as a CMTA advocate, fighter and visionary and her spirit and energy will live on.