The Gaynor Family of New York was a big part of the inspiration for starting Unite For The Cure. In speaking with and getting to know the Gaynors, we found a family that was singlehandedly doing the extraordinary to raise funding for and to accelerate Dr. Keirstead’s stem cell program. When we learned the program was ready and simply needed more funding, we immediately knew that there had to be many more families in the SMA community just like the Gaynors, just like ours, that believed passionately in research focused on curing SMA and specifically Dr. Keirstead’s program. We knew these inspiring families, if given the opportunity, would enthusiastically Unite to collectively see that funding is not an issue in this groundbreaking research. So, we started Unite For The Cure to stand alongside the Gaynors and others who are focused on seeing Dr. Keirstead’s research accelerated and through to human clinical trials. Because we have been so inspired by the Gaynor Family and their accomplishment, we asked them to answer a Q&A about why they are so motivated to raise money for Dr. Keirstead’s program. This is what Vincent Gaynor said:
1> Tell us about your family and how SMA has impacted you personally…
My wife Catherine and I were married on September 8, 2006. We met 2 ½ years earlier at a family gathering. About 30 of my family members were having dinner at a restaurant on the lower east side of Manhattan and Catherine was the sole waitress for all of us. Throughout the night I teased Catherine in a flirting way, we had an instant connection. After leaving with my family, I returned later in the night to ask Catherine out on a date. She said, “Yes”! On that first date I realized that this was the woman I would spend the rest of my life with. We were just your typical middle class couple. We couldn’t wait to start a family. On Feb. 27, 2009 our beautiful daughter Sophia was born. Two weeks after Sophia arrived we noticed something was wrong. Sophia wasn’t moving her legs. At seven weeks we received the diagnosis from the Geneticist – “Sophia has SMA Type I. 50% don’t make it to 6 months and the rest generally do not survive past 2 years, but don’t worry — you guys are young. You can have more kids.” To this day I cannot find words to adequately describe the absolute devastation we felt. We went home and closed the curtains. For two weeks we didn’t leave our bedroom. We just held onto Sophia, crying. I could not get my heart out of my throat. I, in all honesty, was searching my soul for a good reason to carry on living. All I ever wanted was to be a good dad. Then one day something clicked and said, “You are a father, now you must fight and save your daughter!”
2> Tell us how you became involved in Dr. Keirstead’s research and why are you so passionate about it…
After Sophia’s diagnosis, I threw myself completely into the SMA world — from speaking to other parents to finding the best care options for my daughter. We immediately drove to Wisconsin from New York to see Dr. Schroth. Although there were local options, we felt after speaking to other Type I families that Dr. Schroth was the person to see. During this time we were scouring the Internet for something that would cure our daughter, not just treat her. I filled out an application for stem cell treatments in China. There were many other countries offering stem cell treatments, but after seeing videos we felt China had the most promise. We started to fundraise for the $50,000 price tag. About 3 weeks later we received a response from China and we were denied because Sophia was Type I and the disease was too aggressive for any hope with their treatment program. I later realized that this was a blessing, but at the time it was a crushing blow. I started researching again and came across an obscure article on Dr. Hans Kierstead and his work with stem cells. I was blown away by the promise his work held and was mystified why the SMA community wasn’t screaming his name from the highest mountains. I needed to speak to this man. I couldn’t find any contact info for him so I started a Cause on Facebook and asked everyone to help me find Dr. Keirstead. The next day we struck gold. I was forwarded the name of his wife. I sent his wife an email telling her I wanted to help with the SMA Stem Cell Program and I needed to speak with Dr. Keirstead. Hans called the next day and relayed to me that the #1 obstacle he faced with his program was funding. He also explained to me that not getting approved by China was probably the best thing that could have happened for two reasons. First, in other countries there was no regulating body similar to the FDA, so you don’t know if you are even getting stem cells. They could be injecting you with anything. Second, if you were getting stem cells this could be even worse. A stem cell has the ability to become any cell in the body it wants to become. It can become a brain cell, a lung cell, a tumor, a cancer or anything else it chooses to in the injection site. He explained to me that the reason why what he is doing is so profound is because he is converting the stem cells into motor neurons with a very high purity. Once they are converted they no longer have the ability to become anything else. He told me that he had seen no negative side effects in his studies. I relayed to Hans that I would do everything I could to advance his work. I didn’t know how yet, but I was going to try to raise $100,000 for his program.
3> Families of SMA (FSMA) recently announced a fundraising partnership with your family specifically for Dr. Keirstead’s stem cell program. Tell us about that…
Dr. Keirstead put us in touch with FSMA and explained their partnership on his Motor Neuron Replacement Program. After speaking with Kenneth Hobby of FSMA we set up a gift registry and committed to raising $100,000. We honestly had no clue how we were going to raise this money. But we wanted to raise enough money to have a substantial impact on this study — not only for Sophia, but for all of the children impacted by SMA. Our goal was to accelerate this program as much as we possibly could. Having a Type I child, we did not feel as if we had the luxury of sitting back and waiting for things to happen themselves. I needed to feel as if I was doing something to help my daughter. The diagnosis made us feel so helpless; Dr. Keirstead’s research gave us something we had lost — hope. Participating in the funding of this program and having an impact on ending this disease has helped ease those helpless feelings. It is essentially a race against time and in our opinion, this is the only current program with real potential to help Type I children. At the end of 4 months, we had raised over $75,000 for the Motor Neuron Replacement Program. At this point we were approached to raise more money and we agreed as part of a “Challenge Matching Grant”. Our family and our daughter’s nonprofit, Sophia’s Cure, have agreed to raise $200,000 as part of this agreement.
4> How much have you raised so far and how have you accomplished so much in so little time…
We are so excited to say that we have raised over $100,000, and with our Cure SMA NY Gala in November, we are confident that we will have raised $200,000 for the Motor Neuron Replacement Program in just 7 months. Sophia’s Cure and Kylie and Dylan’s Sweet Dreams Foundation have teamed up to host this Gala with 80% of the proceeds going to support FSMA’s Motor Neuron Replacement Program. Some of the proceeds will also go to Columbia University’s SMA Clinic in New York. Our success is the result of a very difficult decision. We agreed to open up our home and to let the world know what we were going through as a family. It was the only way we could do it. We have been very honest in our emotions and describing Sophia’s every day battles to survive. We immediately set up our web site, SophiasCure.com, started a Facebook Cause (with nearly 8,000 followers) and created a Twitter account. We reached out to television, radio stations, and newspapers with our story. We have done a couple of 30 minute interviews for radio stations here in New York ,as well as multiple television news stations. We have been fortunate to have done a national radio show, WCBS, as well as FOX and Friends which is a national television show. We have done multiple newspaper articles locally as well as three articles in NY Newsday. We have been exhausting every means to raise awareness of SMA and our daughter’s fight with this horrific disease. Our mission was to put a face on this disease and to make it personal. We have been humbled by the amazing support we have received by people locally and across the country who have been touched by Sophia’s story. It was such a tough decision to open up our hearts and share our devastation with the world, but it was the best thing we could have ever done.
5> What’s next for your family as far as fundraising and research funding is concerned…
For future fundraising we are going to continue on our journey. We will knock on every door until everyone knows what SMA is. We will continue to fund Dr. Keirstead’s Motor Neuron Replacement Program until it moves to human clinical trials. After that we will continue to focus our funding on programs that will end this disease so future families won’t have to go through what we all have endured in this community. I want to thank Unite For The Cure for coming together as a community. It has been so amazing to see so many families joining together who share the same passion as we do — coming together to end this disease.
Thank you so much Vincent! We’re all in this together and hopefully, collectively, we can fund this promising research to human clinical trials and accelerate the program for every single person impacted by SMA.
