Why We Walk: Ten Years of Marching for Matty
By Mark Wallace, Pittsburgh Walk Now for Autism team captain
Editor's note: The opinions expressed herein are those of the author exclusively.
By Mark Wallace, Pittsburgh Walk Now for Autism team captain
Editor's note: The opinions expressed herein are those of the author exclusively.
Matthew Wallace, left, with Pennsylvania Secretary of Education Gerald Zahorchak
In 1995, when my son Matthew was diagnosed with severe to moderate autism, I was stunned but somewhat hopeful. After all, we were fortunate enough to live in Pittsburgh, home to renowned hospitals and research universities. I quickly made an appointment with one of the top neurologists in the area, expecting that he would be able to explain exactly what had happened to Matty and what could be done to treat his condition. It was disappointing when he said that he didn't know why Matt's brain stopped developing and that there was nothing that could be done to help him. In other words, medical science had no explanation, no treatment or cure for Matt's condition. Even worse, the doctor did not assure us that research was being done or that a break through was imminent. I quickly realized that Matty's condition was considered rare at that time and little research was being done. With science silent, we were at the mercy of any untested treatment that came along; like other parents of children with autism, we tried everything and anything to help him.
In 2000, I heard about an organization called the National Alliance for Autism Research (NAAR). Formed by some dynamic parents of children with autism who planned to organize and promote a series of fund raising walks across the country, its goal was to raise funds to finance biomedical research. They hoped this research would discover the cause (or causes) of autism, which would lead to effective treatments and ultimately a cure. I had waited a long time for the opportunity to fight back against autism. It had stolen so much from my family. I committed myself to fully supporting this organization and the cause of autism research.
Excited and a little nervous, I dove into the first walk for autism research in the country, the Pittsburgh NAAR Walk. I formed a family team that we called “Marchers for Matty.” However, recruiting members and collecting donations would challenge me to do something that I had resisted previously - exposing to my friends, family, colleagues and students the deep emotional pain Matty's condition caused me. I would have to share my fears and the ever-present sense of hopelessness and desperation that surrounded my family and I. Till this time, I spoke very little about Matty's condition. I did not want to be perceived as weak or a whiner. Nevertheless, I understood that in order for people to generously donate their time and money, they had to understand how autism affected families and, in my case, fathers.
By April of 2000, I had registered my team and gathered materials for the Walk. Then, one night while I was sitting in the hospital emergency waiting room, I wrote a fundraising letter to my colleagues at Gateway High School where I am a Social Studies teacher. It seemed as if the words flowed from my heart directly to my hand. I went home and typed it and created a version for my friends and family. I placed a copy of the letter in the mailboxes of more than 100 teachers and sent it dozens of friends and family. I was terrified. I bared my sole for the cause, and now I felt so vulnerable. What if nobody responded? Unbelievably, within hours, checks started to appear in my mailbox along with cards and letters of encouragement. In a few days, checks came in the mail from friends and family. Some donated sums that stunned me. I then appealed to my students by sharing my story about Matty and autism. I invited them to join the Walk team. Several registered and I arranged to meet them on the morning of Walk day in May of 2000. As I drove into the parking lot at the appointed time I feared none would show. However, every single one who had registered was there. For a moment, when I saw those kids in that parking lot, the fear, hopelessness and desperation associated with autism gave way to hope.
The 2000 NAAR Walk was a great success and “Marchers for Matty” has been in every Walk since. During that time, there have been many other parking lot moments. There have been cards, letters, e-mails, fundraising events and acts of caring. Hundreds of students, colleagues, family and friends have walked and countless more have donated. The sincere response that so many have given me continues to give me hope. In fact, this is ultimately what the Walk has meant and continues to mean for me, hope. A hope that somehow the dollars we raise will fund the study that finds the cure or that one of the students who walks with us becomes the researcher that conducts that study. The hope that I might be doing something to rescue Matty from autism is so important to me. Therefore, I am grateful that NAAR (and CAN) merged with Autism Speaks and the Pittsburgh Walk continues. In 2008, there were well over 170 people walking on our team and we raised about $18,000.00. We will be back in 2009 to celebrate 10 years of Marching for Matty. As always, we cannot wait till Walk day.
In 2000, I heard about an organization called the National Alliance for Autism Research (NAAR). Formed by some dynamic parents of children with autism who planned to organize and promote a series of fund raising walks across the country, its goal was to raise funds to finance biomedical research. They hoped this research would discover the cause (or causes) of autism, which would lead to effective treatments and ultimately a cure. I had waited a long time for the opportunity to fight back against autism. It had stolen so much from my family. I committed myself to fully supporting this organization and the cause of autism research.
Excited and a little nervous, I dove into the first walk for autism research in the country, the Pittsburgh NAAR Walk. I formed a family team that we called “Marchers for Matty.” However, recruiting members and collecting donations would challenge me to do something that I had resisted previously - exposing to my friends, family, colleagues and students the deep emotional pain Matty's condition caused me. I would have to share my fears and the ever-present sense of hopelessness and desperation that surrounded my family and I. Till this time, I spoke very little about Matty's condition. I did not want to be perceived as weak or a whiner. Nevertheless, I understood that in order for people to generously donate their time and money, they had to understand how autism affected families and, in my case, fathers.
By April of 2000, I had registered my team and gathered materials for the Walk. Then, one night while I was sitting in the hospital emergency waiting room, I wrote a fundraising letter to my colleagues at Gateway High School where I am a Social Studies teacher. It seemed as if the words flowed from my heart directly to my hand. I went home and typed it and created a version for my friends and family. I placed a copy of the letter in the mailboxes of more than 100 teachers and sent it dozens of friends and family. I was terrified. I bared my sole for the cause, and now I felt so vulnerable. What if nobody responded? Unbelievably, within hours, checks started to appear in my mailbox along with cards and letters of encouragement. In a few days, checks came in the mail from friends and family. Some donated sums that stunned me. I then appealed to my students by sharing my story about Matty and autism. I invited them to join the Walk team. Several registered and I arranged to meet them on the morning of Walk day in May of 2000. As I drove into the parking lot at the appointed time I feared none would show. However, every single one who had registered was there. For a moment, when I saw those kids in that parking lot, the fear, hopelessness and desperation associated with autism gave way to hope.
The 2000 NAAR Walk was a great success and “Marchers for Matty” has been in every Walk since. During that time, there have been many other parking lot moments. There have been cards, letters, e-mails, fundraising events and acts of caring. Hundreds of students, colleagues, family and friends have walked and countless more have donated. The sincere response that so many have given me continues to give me hope. In fact, this is ultimately what the Walk has meant and continues to mean for me, hope. A hope that somehow the dollars we raise will fund the study that finds the cure or that one of the students who walks with us becomes the researcher that conducts that study. The hope that I might be doing something to rescue Matty from autism is so important to me. Therefore, I am grateful that NAAR (and CAN) merged with Autism Speaks and the Pittsburgh Walk continues. In 2008, there were well over 170 people walking on our team and we raised about $18,000.00. We will be back in 2009 to celebrate 10 years of Marching for Matty. As always, we cannot wait till Walk day.
The
Pittsburgh Walk Now for Autism
will be held on Saturday, June 13, 2009. Walk Now for Autism events are taking place all across the country;
click here
to find an event near you.
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