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Read all about our ALS Warriors here
When we (at the NAC) learned that one of our own members, Matt Bellina, was directly involved with ALS TDI therapeutic testing we knew that our destiny had been carved out for us.
Matt was diagnosed with ALS in April of 2014 and is currently enrolled in the Precision Medicine Program at ALS TDI, which is aggressively seeking treatments utilizing cutting edge medical technology now. The keyword is “now”. They are not waiting for long government trials, but rather are able to apply stem cell and other modern capabilities today. You can watch Matt’s story below.
Our ALS family is growing as we are shocked and saddened to hear that Marilyn Mongiello’s husband, Frank, has been diagnosed with the disease. Many of you know Marilyn as one of our amazing Group Exercise Instructors here at the NAC for the past 15 years. She and Frank have six beautiful children together.
Through some very good fortune, Frank is currently enrolled in the Precision Medicine Program at the ALS Therapy Development Institute (TDI) in Boston, just as Matt is.
It is our hope that you will look into your hearts and support Matt’s Mission to donate to research for a cure for ALS to help both Matt Bellina and Frank Mongiello. The funds raised through Matt’s Mission will go directly to ALS TDI where both Matt and Frank receive treatment.
Greg Heydet, Sr. who is 58 years old, was diagnosed in May 2013 with ALS, Amyotrophic Lateral Sclerosis (also known as Lou Gehrig’s disease). ALS is a progressive neurodegenerative disease that causes muscle weakness, paralysis and ultimately, respiratory failure. ALS has no cure.
Greg cried on the day he received his diagnosis. It took a few months to sink in and he had to immediately retire. Greg spent most of his professional career working at the CRC Industries, Inc. in Warminster. CRC is a global chemical solutions company with corporate headquarters in Horsham, PA and a distribution center in Warminster. There is no actual causal proof, but one can only imagine that continuous exposure to chemicals may have played a role in Greg’s eventual diagnosis of ALS. He is also a Type 1 Diabetic. With trying to avoid sugar, he drank a lot of Diet Pepsi. Diet Pepsi contains Aspartame. This disease comes out of nowhere to 90% of the cases and knocks you off your feet in an instant.
Greg is a softball coach and has played fastpitch softball all of his life. His pitching hand is his right hand, so the weakness was noticeable as early as 2009 as his pitch speed was decreasing. To remedy the weakness Greg had surgery on his hand, which in the end degenerated faster as is the case with ALS. That was misdiagnosed. The diagnosis only came only after all other possibilities were ruled out and after the surgery. There is no test for ALS, it is only diagnosed when everything else is ruled out. In Greg’s case it took 4 years to diagnose.
Greg now lives in Jamison and is married to his lovely wife Cindi and has 6 children from a large blended family. He also has 4 grandchildren with 2 more on the way. He is a family man all the way and loves kids. His life is centered around kids as he is the current coach for the Council Rock South High School Girls Softball team as well as the 18 and Under Blue Thunder Travel Team. Don’t ask Greg to do anything on most weekday evenings as he will tell you no, his girls come first and he wants to spend as much time as he can with them. His Softball career was very good to him and he wants to give back. Family & Softball keeps him going.
There is still no cure or even any effective long term significant treatment or drug for ALS. The only drug that is currently approved by the FDA in this country extends the life of an ALS patient for 2 to 3 months. All the medical field does for an ALS patient now is measure how much they deteriorate from doctor’s visit to visit.
Greg is currently taking the Deanna protocol as his only treatment which consists of vitamins, nutrients and dietary measures. The Deanna Protocol® is a part of the Winning the Fight Program for ALS, an all-natural metabolic program developed by Dr. Vincent Tedone through his research on ALS. Greg’s experience with this protocol has been positive from his point of view. He recalls that at one point he was unable to obtain the treatment products and he felt a noticeable negative difference in his well-being.
Despite the protocol, Greg notes that each day he knows that he is getting a tiny bit worse. That is why each morning he follows a strict regime of stretching, riding a stationary bike and foot agility work, such as squats and toe raises. The feet are known to stimulate the brain and he wants to keep that connection alive. It takes him a good 3 hours each day to get up and get going. Despite all this he knows that his strength will wane and eventually he will need a wheelchair and more.
When you talk to Greg you can see his determination. That is exactly why he wanted to become a “Have a Heart” ALS Warrior along with Matt Bellina and Frank Mongiello.
Greg states, “People need to know how deadly ALS is and they need to do something about it.”
Greg wants to share his story and promote the efforts of the NAC Have a Heart Foundation to raise money for ALS Research and to advocate for the Right To Try Act in Washington DC, which will allow terminally ill patients like him gain access to experimental drugs faster than the FDA currently allows.
Greg’s hope is that all those folks that he has known and will know, will be moved by his situation and will support his work with the foundation.
“I don’t wish this on anyone. If more people knew what ALS does to a person and family, they would want to donate and find a cure. The thing is, it can happen to anyone. There are thousands of people out there who have yet to be diagnosed. Don’t wait until you are diagnosed to help, do it now. Because you will want a cure if someone you know has ALS” …Greg Heydet, Sr.
Below are pictures of Greg, his family and his teams.
Yet in March of 2005, Augie’s life took an unexpected turn; he was diagnosed with ALS. Drawing strength from his family, friends, and a flood of supportive emails, Augie maintains a positive attitude and continues to lead an active life. As Chairman of the Board of Directors at ALS TDI, Augie is instrumental in the management of the Institute and acts as a spokesperson for the company.
What has Augie’s Quest help ALS TDI accomplish?
Augie’s Quest supporters have critically impacted these ALS TDI research programs:
Where to go for additional information on Augie’s Quest?
Below are the runners from 2016. We will soon be posting our runners for the Philly Rock n Roll Half Marathon for September 16 and 17, 2017.