Fighting against a disease with no known cure can feel overwhelming, but hope is far from lost. It is thanks to loyal donors and local community leaders bringing awareness to diseases such as Progressive Supranucluear Palsy (PSP) that gains motivation to continue funding and searching for effective treatment. Later this month, on March 18, the SW Florida PSP Support Group is hosting its 14th annual Cure PSP Awareness and Memorial Walk. The purpose is clear: unlock a cure for neurodegenerative disease.
These diseases are incurable, fatal, and have a devastating impact on not just the patient, but the family as they struggle to cope financially and emotionally with the patient’s diagnosis. The support group consists of individuals who have lost loved ones to these diseases and want to help those that are currently dealing with the diseases, and the newly diagnosed. Over the years the group has lost many members to PSP, MSA (multiple system atrophy), and CBD (corticobasal degeneration) from Marco Island, Naples, Ft. Myers, and Canada. Many tourists during season that have come in contact with the group attend the meetings during the winter. Many of those in the group feel that these diseases are not as rare as they say. One of the reasons is that the cause of death is often noted as something other than PSP, MSA, and CBD. Often doctors put death from pneumonia, heart failure, infection, or something else making it difficult to consider as a statistic without the proper cause of death.
“The purpose of the CurePSP Awareness & Memorial Walk is to honor those that have died from these diseases, support those suffering now, raise awareness, educate the public, raise money to help find a cure, and to let people know about our Support Group in Naples.” SW Florida PSP Support Group Coordinator Christina Dean stated. “Our group is proud of the success of the walks over the years. We are grateful to the public for supporting us and to CurePSP. They are always there to help us with the walks and guide us through the planning process.”
Dean’s personal connection with PSP includes her uncle, Elmer Lokkins, who passed away after suffering many years from PSP. Dean and her husband were his main caregivers. With a lasting impact from losing a close family member, Dean handles the correspondence and website while her husband is the photographer for the event.
With so much history in the community, this event dates back to 2005 when Joan Reifler held her very first Cure PSP walk at the Naples Bath and Tennis Club Resort in Naples. Her husband Norman passed away in 1999 from PSP. As the walk gained much attention over the course of the next six years, in 2011, the walk relocated its venue to Mackle Park on Marco Island. Joan is still involved in the walk to this day. Even with all of the event planning to do, she still has time to bake hundreds of cookies every year for the event.
The SW Florida PSP Support group meets every second Saturday of the month at ManorCare of Lely Palms in Naples. To get involved with the SW Florida PSP Support Group, contact 239-353-3960, or visit swflpspsupportgroup.wixsite.com/swflsupportgroup.