‘Longest Day’ honors Alzheimer’s sufferers and caregivers
June 19, 2018
By Steve Dorfman, Palm Beach Post Staff Writer
For family caregivers of Alzheimer’s sufferers, the disease is heartbreaking — and exhausting.
It’s a perpetual ‘round-the-clock challenge — one that some studies say is responsible for 40 percent of family caregivers dying before the recipient of said care.
To bolster hope and support for all those affected by Alzheimer’s disease, Thursday — the summer solstice — is the day the Alzheimer’s Association has designated for its Longest Day awareness and fundraising initiative.
"The Longest Day symbolizes the challenging journey of those living with Alzheimer’s disease and their caregivers,” explained Southeast Florida Chapter of the Alzheimer’s Association spokeswoman Yuleika De Castro. “Participants will do what they love — biking, hiking, playing bridge, swimming, knitting and more — to honor a caregiver, someone living with Alzheimer’s or someone lost to the disease.”
Wynne Stallings, a mental health therapist with SoulSpring Counseling in Palm Beach Gardens, is using her love of yoga to honor her late grandfather, as well as her 73-year-old father, who was diagnosed eight years ago.
“The disease is so devastating — it just takes everything away from you, both body and mind,” said Stallings.
A regular at Om Yoga & Wellness Studios (302 23rd St., Suite 300, West Palm Beach), Stallings is partnering with owner Lourdes Sanchez to raise money for her Longest Day “team” — Yoga for Ya-Ya.
“We’ll be encouraging everybody who comes into the studio all day on Thursday to donate to the Alzheimer’s Association.”
Other local businesses and assisted living facilities are also getting into the act.
At The Carlisle Palm Beach (450 E. Ocean Ave., Lantana), a daylong, family-friendly, fundraising carnival is open to the public. Starting at 10 a.m. with live animals and a petting zoo, the event will include food, music, a raffle, a Wii bowling competition, dancing and a silent auction featuring the art creations of The Carlisle Palm Beach’s memory care residents.
At MorseLife, memory care residents will partake in ballroom dancing sessions because, as MorseLife spokesman Greg Goodman said, “Studies show that ballroom dancing can help slow down the progression of early stage Alzheimer’s, so that’s why we offer it to our residents on a regular basis.”
Continuing the ballroom dance theme, the Arthur Murray Dance Center (7531 N. Federal Highway, Suite E3, Boca Raton), is inviting the public to attend a fundraising dance party that starts at 7:30 p.m.
But local Alzheimer’s advocates know that a day of fun and games is just a brief respite from the hard work needed to make a dent in this invariably fatal disease, with which an estimated 5 million Americans are currently diagnosed.
That’s why over the weekend, a 20-person contingent from the Southeast Florida Chapter of the Alzheimer’s Association traveled to Washington to meet directly with Florida Reps. Lois Frankel, Brian Mast and Ileana Ros-Lehtinen, as well as staff members from the offices of Reps. Ted Deutch, Frederica Wilson and Carlos Curbelo, to lobby for more funding and legislative policies to help the 540,000 Floridians currently living with Alzheimer’s.
One of those making the trip was Cooper City resident Carolina Sanchez, a 21-year-old University of South Florida student who’s spending the summer as a public policy intern for the Southeast Florida Chapter of the Alzheimer’s Association.
“I know the realities of this disease all too well. In May 2015, my grandfather passed away from dementia,” said Sanchez. “I had to watch my grandmother and my father deal with his fast decline. The last months of his life he barely recognized his own children, grandchildren or even his wife. I witnessed firsthand the emotional and financial strain it puts on the entire family.”
Perhaps, though, Alzheimer’s advocates can take some solace in knowing that researchers are working diligently to find potential cures.
In Miami, Longeveron LLC, a biopharmaceutical company that develops stem cell therapies for age-related diseases, is about to start a Phase 1 clinical trial to evaluate the safety and efficacy of its allogeneic mesenchymal stem cells (MSCs) in patients with Alzheimer’s disease.
The study, which is still seeking its 30 participants (call Longeveron at 305-909-0840 to learn more about eligibility), will be conducted at the University of Miami Miller School of Medicine, Miami Jewish Health Systems and Brain Matters Research in Delray Beach.
Neurologist Dr. Mark Brody, of Brain Matters Research, believes that “regenerative medicine is the future and controlling inflammation in Alzheimer’s disease is the key to making a breakthrough.”
A breakthrough, one hopes, that would one day make obsolete the need for Longest Day fundraising.
Longeveron (www.longeveron.com) is a regenerative medicine therapy company founded in 2014. Longeveron’s goal is to provide the first of its kind biological solution for aging-related diseases, and is dedicated to developing safe cell-based therapeutics to revolutionize the aging process and improve quality of life. The company’s research focus areas Aging Frailty, the Metabolic Syndrome and Alzheimer’s Disease and gratefully acknowledges the generous support of the National Institutes of Health, the Alzheimer’s Association and Maryland Stem Cell Research Fund. Longeveron is also conducting a Phase 1 trial to study Hypoplastic Left Heart Syndrome, a rare indication that affects infants, supported through a grant from the Maryland Stem Cell Research Fund.
For more information about the clinical trials
Longeveron is sponsoring, visit ClinicalTrials.gov
SOURCE Longeveron LLC