MARION, OH – When it comes to supporting those suffering from amyotrophic lateral sclerosis (ALS), Marion Community Foundation is ten years ahead of the curve of the current ice bucket challenge. Established in 2004, the Spencer C. Stephens Flamingo Fund is a donor advised fund at Marion Community Foundation which makes awards to the ALS Association’s Central and Southern Ohio Chapter.
“The Spencer C. Stephens Flamingo Fund is one example of our many designated funds that generous individuals have established at Marion Community Foundation to benefit specific, worthy, local causes such as Marion General Hospice, vision care, child care, arthritis treatment, Parkinson’s Delay the Disease, HIV/AIDS care, Wounded Warriors Project, the welfare of persons with disabilities, and others,” said Dean Jacob, president and CEO of Marion Community Foundation.
The Spencer C. Stephens Flamingo Fund was established in memory of the late Spencer Stephens, who passed from ALS in 2003. The fund was created by his widow, Marty (Stephens) Paciocco, and business partner and friend, Ken Vincent, largely from proceeds of a memorial golf tournament. Named the Spencer C. Stephens Flamingo Fund, it honors Spencer and utilizes what became, according to Paciocco, a sort of family mascot – the flamingo – an item Spencer collected. “Golf was a big part of Spence’s life,” said Vincent. “Spencer’s golf buddies came from all over — Michigan, Minnesota, Florida, and Arizona – as well as locally to support the tournament, which raised approximately 75 percent of the total gift for this fund.” “We wanted Spencer to be remembered more for his life than his death,” Paciocco said. “We wanted funds to be available to help families and people with ALS.” Initially, awards were made from the Spencer C. Stephens Flamingo Fund to the ALS Association as general donations. In 2008, the ALS Association’s Central and Southern Ohio Chapter approached Paciocco and Vincent about funding a backpack project for children of ALS victims. Modeled after a program at the University of Connecticut Health Center, the backpacks are filled with resources and materials created to help children understand and cope with the changes associated with ALS.
While the contents of the backpack vary based on the age of the recipient, the general contents include such items as a copy of the book “Morrie: In His Own Words,” a writing journal, a list of useful books and websites, writing supplies, a worry box, a flashlight, a stuffed flamingo, an ALS activity book, key fob and pen, a Strike out ALS wristband bracelet, a Walk To Defeat ALS T-shirt, disposable flash-camera, flamingo tumbler, and picture travel mug.
“Our daughter was seven when Spencer was diagnosed and 10 when he died, so supporting something that helped children cope in some way appealed to me,” said Paciocco. “With no cure, ALS is an ‘orphan disease’ and it impacted our daughter significantly.”
Larry Geissler, immediate past president of the MCF board of trustees, lost his first wife, Carol, to ALS and is supportive of the awareness being raised by the current ice bucket challenge. According to statistics supplied by Marlin Seymour, executive director of the ALS Association Central & Southern Ohio Chapter, the national ice bucket challenge had surpassed $92 million in donations to ALS organizations as of late-August. “I am glad for the social media phenomenon,” Geissler said. “I am also glad for the continued support of Major League Baseball after losing players like Lou Gehrig and Catfish Hunter to the disease. I am glad for the annual Walk to Defeat ALS, which will take place at Ohio State in Columbus on Sept. 21. All of these efforts raise awareness and funds to fight ALS.” According to Paciocco, approximately 30,000 Americans have ALS at any given time. “There are way more people affected than that number would imply,” she said. “When you take into consideration family members, children, friends, and acquaintances, the number of people impacted is far greater than 30,000.” Approximately 5,600 people in the U.S. are diagnosed with ALS each year, with no racial, ethnic or socioeconomic boundaries.
“It’s a very frustrating diagnosis,” said Geissler. “At present, there is no cure, no major research taking place, and only one FDA-approved treatment drug, which is not a cure and only serves to give victims a little more time. This is why we should leave no stone unturned in creating awareness of and supporting research for ALS.”
ALS is a progressive, degenerative nerve disease that, while leaving victims’ minds intact and active, destroys their bodies. Most frequently occurring in 50-60 year olds, ALS has claimed victims as young as 30. The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk, as well as those that control vital functions such as speech, swallowing and later breathing, generally follows. Life expectancy of an ALS patient averages about two to five years from the time of diagnosis.
Geissler said he joined Marion Community Foundation because of funds like the Spencer C. Stephens Flamingo Fund. “I have been on the board at Marion Community Foundation for the last eight years and I do that because of funds like Spencer’s fund – and many others like it — that have been created by people in Marion to help other people in Marion,” said Geissler. “Marion Community Foundation helps our community take care of its own.” He agrees with the need to support families touched by ALS. “Carol got to hold each of her grandchildren before she died, but she never got to be the grandmother she wanted to be for them. This disease reaches across generations,” he said.
Gifts from the Spencer C. Stephens Flamingo Fund fill a special niche at the ALS Association Central and Southern Ohio Chapter, funding its only program to support children from ALS families, said Seymour. The program is named the Flamingo Backpack Project to honor its benefactor.
“We send out 150+ backpacks a year,” she said. “They are very gratefully received.” To illustrate this point, Seymour offered samples of thank you notes the Chapter has received.
“We received the backpack on Saturday,” wrote one mother. “It is wonderful! Duncan has had such a positive response to everything, especially the ALS workbook. It gave us a wonderful tool to talk about some of the concerns that he has had. Thank you so much for sending it to Duncan.” And, a grandmother wrote, “Thank you so much for sending the stuffed animals, backpack and books to my grandchildren. My Ellie calls the camera her Grandma camera. It is such a thoughtful thing to do.”
“When the ALS Ice Bucket Challenge began popping up everywhere, it didn’t take long for us to realize Marion Community Foundation’s own connection to ALS with the Spencer C. Stephens Flamingo Fund and our board member Larry Geissler’s personal connection,” said Jacob, who made his own ice bucket challenge donation via the Spencer C. Stephens Flamingo Fund. “The Flamingo Backpack Project is special because you can see such a tangible benefit from the grant we make from the fund to the Central Ohio ALS Chapter,” said Jacob. “When Marty and Ken established this fund, they had in mind that it should benefit children related to ALS and that it should have an immediate benefit.”
According to Jacob, anyone can contribute a tax-free donation to the Spencer C. Stephens Flamingo Fund by contacting Marion Community Foundation — or simply writing a check to Marion Community Foundation and indicating that the donation to go to the Spencer C. Stephens Flamingo Fund.
Located at 504 S. State St. in Marion, Marion Community Foundation can be reached by calling 740-387-9704 or online at marioncommunityfoundation.org.