Wednesday, April 24, 2019

CurePSP: Walking Towards a Cure


Family members (from left) Ellen, Judy, Father Al, Megan and Dru next to a memorial of Al’s late wife Mary Lou Johnson. Photos by Jesus Calo

Family members (from left) Ellen, Judy, Father Al, Megan and Dru next to a memorial of Al’s late wife Mary Lou Johnson. Photos by Jesus Calo

he Southwest Florida Support Group recently hosted its

15th annual CurePSP Walk at Mackle Park. The public gathered to unlock the secrets of brain disease and inspire hope. A slight overcast of grey skies did not detour the community from the walk’s purpose: raising awareness.

“The mission is all about awareness,” Walk Coordinator and Support Group Co-Facilitator Cindy MacDonald stated. “Getting people here to connect with others affected by this disease is what today is all about.”

The walk offers comfort to those who are caregivers, family members, friends and patients living with PSP.

The walk offers comfort to those who are caregivers, family members, friends and patients living with PSP.

So, what exactly is PSP? This is a question so many are left with when initially diagnosed. The acronym stands for Progressive Supranuclear Palsy, a neurodegenerative disease. Similar diseases are CBD (Corticobasal Degeneration), MSA (Multiple System Atrophy), and ALS (Amyotrophic Lateral Sclerosis). Patients with PSP can experience personality changes, loss of balance and forgetfulness. No longer is it a disease that affects the elderly population, as it is now being noticed earlier in 50- and 60-year-old patients. Often it is misdiagnosed as Parkinson’s Disease in its early stages. Awareness has influenced the need for more medical research of these prime of life diseases to unlock a cure.

Walk Coordinator Cindy MacDonald and Director of Events Jaclyn Zendrian

Walk Coordinator Cindy MacDonald and Director of Events Jaclyn Zendrian

The need for more awareness and medical research inspired the first walk over 15 years ago, which has grown into what it is today. After the morning registration process, the walk kicked off promptly and the crowd lapped around Mackle Park’s lake. Patients, friends and families from all over the country marched on as they discussed their personal experiences involving PSP or resembling diseases. Throughout the walk’s path, signs were placed to recognize patients that currently battle PSP and honor the brave lives lost to the disease. This gesture encourages the hope that a cure will be found soon.

(From left) Cindy MacDonald commends Mitch Kanefsky, Pat and Christina Dean’s efforts throughout the years.

(From left) Cindy MacDonald commends Mitch Kanefsky, Pat and Christina Dean’s efforts throughout the years.

With a large turnout every year, over the course of 15 years since the walk’s beginning, a total of $259,516 has been raised. The volunteers are the backbone of the event’s success, and many of them have a loved one who is affected by the disease. Many local businesses also contributed to the walk with in-kind or monetary donations. Among this year’s coveted raffle and silent auction prizes were gift cards to restaurants, salons, local clubs, a barrel of top-shelf liquors, and a $100 scratch-off ticket board.

 

 

As PSP continues to gain more recognition amongst medical professionals, there is an ongoing network being formed for patients to find care easier. The CurePSP organization is resourcing efforts to help connect people to the right support groups, medical care, and events such as the walk. All the way from New York, the Director of Events Jaclyn Zendrian was among the crowd and spoke words of gratitude during lunch.

 

 

“This is by far our largest and most successful event,” Zendrian stated. “From the bottom of my heart and all my coworkers at CurePSP, we thank you so much for coming out to this walk.”

The Southwest Florida PSP Support Group meets the second Saturday of each month at the Manor Care facility in Lely Palms in Naples. For support group information contact Group Co-Facilitator Cindy MacDonald 239-353-3960 or hotrdh@hotmail.com.

The “Barrel of Booze” featuring top shelf liquor products was among coveted raffle and silent auction prizes this year.

The “Barrel of Booze” featuring top shelf liquor products was among coveted raffle and silent auction prizes this year.

The walk is a moment for loved ones to find hope in unlocking a cure for PSP, CBD, MSA, and ALS.

The walk is a moment for loved ones to find hope in unlocking a cure for PSP, CBD, MSA, and ALS.

Sisters Jodi and Stacey Ritz traveled from New York to honor their father Johnny Ritz at the walk.

Sisters Jodi and Stacey Ritz traveled from New York to honor their father Johnny Ritz at the walk.

 

 

The success of the event can be attributed to the energy of its volunteers, some waking up as early as 4 AM to begin preparations.

The success of the event can be attributed to the energy of its volunteers, some waking up as early as 4 AM to begin preparations.

Burgers and hot dogs were grilling all morning to fuel the crowd’s appetite.

Burgers and hot dogs were grilling all morning to fuel the crowd’s appetite.

Cindy MacDonald (left) honors her late mother Dorothy by adding to her shirt every year she attends the walk.

Cindy MacDonald (left) honors her late mother Dorothy by adding to her shirt every year she attends the walk.

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