What do these young people have in common: Jason Smith, Doylestown native; Matt Bellina, Navy pilot from Holland, Pennsylvania; Beth Hebron, paralegal from New Jersey; Peter Frates, baseball star from Boston; Pat Quinn, athlete from Yonkers; Steve Gleason, New Orleans Saints NFL star; Corey Reich, college student from San Francisco, Sarah Cognaliese, New York Times writer from California; Dr. Stephen Finger, college professor?
All are 30 something, young, and all have ALS. They are losing their ability to speak, to walk, to use their arms, and have been told that there is no cure. They also have joined forces and refused to accept their diagnosis, collaborating often on a daily basis, raising millions for research, visiting politicians, changing laws to help ALS patients, meeting with scientists to find the most effective developments in ALS, meeting with the FDA in Washington to speed up the release of ALS drugs, opening foundations, and determined to find a cure for ALS.
Thanks to these young ALS patients and Pat and Pete’s creation of the Ice Bucket Challenge, the public is no longer asking, “Is that disease still around?” Yes, it is for now at least, still without a cure and life expectancy is three to five years.
ALS (Lou Gehrig’s Disease) attacks the motor neurons in the brain and spinal cord that control voluntary muscles. As the motor neurons die, patients lose their ability to move their arms, legs, speak, breathe and become totally paralyzed. ALS affects 450,000 people worldwide. Every 90 minutes someone is diagnosed and dies from ALS.
One such ALS warrior is Jason Smith, Bucks County native, 37, married with two small daughters, 5 and 8. Both he and his wife, Melissa, are from the Doylestown area, attended Central Bucks schools and college in Philadelphia. Jason’s mother, Barbara, now retired, was formerly a Central Bucks teacher and vice president of Weidel Realtors in Pennington. His dad, Gene, was CEO of the Central Bucks YMCA for over 20 years. Melissa’s family owned the Warrington Skating Rink for over 40 years.
After several months of experiencing slurred speech and muscle vacillations, Jason was diagnosed in April of 2014.
“The news devastated us,” said his mother, Barbara Smith. “My husband and I had retired, had three beautiful children, all married, each with two adorable children, and then life changed. I so clearly recall the day I received the call. I was out for a run, stopped dead in my tracks and cried. It was the news I did not want to hear.”
One year ago at the Smith annual reunion in Cape May, Jason was swimming, walking, and feeding himself. Only his speech was slurred. This past June again at Cape May Jason could no longer walk, wheelchair bound, use his arms to drive or feed himself. Life had changed.
“Jason has been an inspiration to all of us,” says his sister, Kim. “In spite of his disability he still plays pranks on our parents and invented ‘sand surfing’ for his kids at the beach.”
The Smith family is not taking this diagnosis lying down. The family formed a foundation last year and funded more than $200,000 for research to ALS.net (ALS/TDI) located in Boston, the largest ALS research facility in the world, and the ALS clinic in Houston.
“Last November ALS/TDI hosted an event which we all attended,” Gene Smith said. “The staff and scientists at ALS.net are warm, caring, and determined to find a cure. Their goal is to be put out of business, as when they find a cure, they will be no longer needed. Then they will go on to find the next cure for the next disease. We just love Dr. Steve Perrin and his staff at ALS.net.”
The Smiths also funded Dr. Stanley Appel’s ALS clinic at Houston Methodist Hospital.
“How fortunate that we have found this man,” Barbara Smith said. “He’s been our guardian angel. Although he does not have a magic wand, he’s been upbeat, positive and encouraging. Dr. Appel is 84 years old, has been working on ALS for many years and says he is not retiring until he finds the cure.”
Jason Smith and his fellow ALS warriors have become close friends, raising money for ALS, speaking out to politicians, heading to Washington for advocacy meetings, forming an advisory group, speaking to groups, and participating in ALS meetings.
Pete Frates and Pat Quinn are kicking off another Ice Bucket Challenge on Aug. 1 and the ALS families will follow their lead. Their mantra is “Every August Until a Cure.” Millions are still needed for drug development and clinical trials and these brave young ALS patients are more determined than ever.
To maintain an ALS patient with adaptive equipment such as vans, stair lifts, customized wheelchairs, medical care, nursing care is about $200,000 a year, a staggering number. Many ALS families go bankrupt.
Last year more than 350 people turned out in Doylestown, Pennsylvania, for a Sing Your ALS Fundraiser for Jason’s cause. “The outpouring of our wonderful community touched our hearts,” Gene Smith said. “We live in such a caring community. For years my wife and I gave to charity. Now that we are the recipients, it’s humbling.”
On Saturday, Oct. 3, from 2 to 5 p.m. the Smith and Mekosh families are hosting a Live4Jay fundraising event at the Station Tap House in Doylestown to raise money for Jason’s Trust Fund to help with medical expenses. For more information on the event and for tickets to attend the event email Barbara or Patti at besmith8000@gmail.com or pmekosh@gmail.com. Donations can be made to Jason’s Trust Fund at every90minutes.org.
