“My Friend Saved My Life. After a night of drinking at the bars on SLU’s campus I jumped into my car and proceeded to go back to my house in St. Charles. Before I could be on my way, however, I stopped at the nearest gas station to fill up my tank before I headed off on my 25 mile trek. I pulled into the CFM at Grand at Hwy 40 to do just that when I ran into one of my friends. I had not seen in sometime. He asked how I had been, what I did that night, and what I was about to do thereafter my stop at the gas station. Recognizing that I was not in the best shape to drive he attempted to convince me to just stay at his apartment which was only a block away. Adamant about going home I told him that I was fine to drive home. Then, he ran to his car and came back with the blue “How to Save a Life” wristband, and said “come on it’s not worth it.” That’s all it took for me. After he handed me the wristband I parked my car on the other side of the parking lot, jumped in his car, and spent the night on his couch. I don’t know exactly what would have happened if I drove home that night, but what I do know is that I am no longer willing to test it. His act of strength in my time of weakness saved my life whether he knows it or not. I don’t see him very often but when we do cross paths I always bring up the time he saved my life. Since that night I have often tried to replicate his actions and show the strength to others that he was able to show me that night. “

More than 20 years later, Cohen is a camp director, celebrating the first year of Camp Twitch and Shout, a place for youngsters, who like Cohen, have Tourette syndrome.

“Tourette syndrome is a neurological disorder which causes people to make noises and tics that they can’t control,” Cohen says.

Fifty campers, between the ages of 7 and 18, came from all over the country to spend a week in Winder, Georgia, about 45 miles east of Atlanta. They have plenty to do, from swimming and fishing to music and arts and crafts. Most have been teased or harassed in school, and the camp is a place just to have fun.

“It’s very nice to be able to let it all out and just not have to worry and not have people stare at you and think that you’re weird and think — what’s wrong with that person?” says 16-year-old camper and black belt Tinsley Birchfield of Atlanta.

For other campers, such as Jacob McGee of Savannah, Georgia, just being outdoors is magical. “My favorite part was when we climbed the tree. That was pretty awesome. I went as high as I could go. It was really fun,” says the 11-year-old.

According to experts, Twitch and Shout is one of only five weeklong camps in the country for children with Tourette syndrome. Atlanta-based child neurologist Howard Schub says such camps help children better cope with their condition. Some campers have never met another kid with Tourette syndrome.

“A child goes to camp, they see that they’re not the worst. … There are others that are functioning pretty well with worse tics than they,” Schub says.

Cohen adds, “They see that wow, ‘There are other kids that are like me.’ They laugh, they tell the same jokes, they have the same interests. And what we hope is that their self-esteem goes up.”

Twitch and Shout campers display motor tics common to most kids with Tourette syndrome such as eye blinking, facial grimacing, shoulder shrugging, head jerking, and — in a few rare cases — cursing. Camp activities are filled with the sounds of typical vocal tics: sniffing, throat clearing, hooting, barking, hissing and squealing.

But campers such as teenager Kevin Kardon of Athens, Georgia, say they’ve just gotten used to it.

“It’s just kind of like you’re listening to music, and you hear something in the background and you don’t really hear it,” Kevin says.

According to the Centers for Disease Control and Prevention, three out of every 1,000 school-age children are believed to have Tourette syndrome. The cause is unknown, but genetics appear to play a role. Most children develop the condition between 7 and 10, and if their tics are mild to moderate, they usually require no medicine to control them. Symptoms usually peak during the late teens or early 20s.

“Many children, as they get older, the tics become either much less prominent or certainly reduced to a single or just a few tics that are not as disabling,” Schub says.

That was certainly the case with Cohen. Barking is still his dominant tic, but when he was the age of his campers, he wrestled to control several others, including eye blinking, teeth chomping and arm twitching. In middle school, when his tics were at the height of their intensity, the principal approached him and asked if he’d like to educate the student body about his condition. Cohen says this move changed his life.

“They gave me a standing ovation, and it was on that day that I realized the power of education. I wanted to be that teacher that I never had. And that was my dream. I wanted to be the teacher that focused on kids’ strengths, not weaknesses,” he says.

And that’s what he’s been trying to do in the classroom for more than 13 years. At 35, Cohen is an elementary school teacher, the author of a book on Tourette syndrome and now a camp director. He says he hopes his campers find strength in knowing they are not alone and will carry this new confidence home with them to face the challenges of the upcoming school year.

“When they have tough times and they think they can’t find success, it’s our goal that they will think back to their experience at Camp Twitch and Shout and say, ‘You know what? I can do it; I can be successful because I did it at camp,’ ” Cohen says.

Next summer, Cohen says he plans to recruit twice as many campers and hopes the experience will be as worthwhile for them as it was this year for 15-year-old Chris Wall of Athens.

“This camp was awesome because it had people just like me,” says Chris, beaming.

In my first year of Junior High I was a typical guy who would go to the school dances and dance with girls like most other guys that age going through puberty.  Around the age thirteen I began having feelings that I kept attributing to what I would later on learn was self denial.  Those feelings were attraction, sexual attraction towards other guys.  I became withdrawn and depressed, all the while not realizing what the cause was as I was subconsciously in denial of who I am.  It wasn’t until shortly after I turned 16 that I woke up one morning and I said to myself   “I’m gay”.  First there was shock, and as I realized more and more that the feelings that I had made sense and it painted the picture of how I had been in self denial which caused my depression. I told my best friend of 11 years online (because I was ashamed and embarrassed to tell him face-to-face) that I was gay.  His first reaction was one of near disgust but after a minute or so he calmed down and even told me that it didn’t change anything; we were still best friends that grew-up together. However, that didn’t prove to be how things turned out.

It was the summer before my Junior year in High School when I had done the normal teenage things, like hanging out with my friends and getting my Driver’s License. That summer I had also had realized, admitted to myself, and came out to my best friend that I was gay. But my summer of major events wasn’t over yet. The shame and guilt I felt along with me knowing I would never be able to have the “normal” future everybody always sees themselves in, had led me into a downward spiral of hopelessness and depression. It resulted in me trying to take my own life.  While I was in the emergency room the Dr. told my parents to go home and search my room to see if they could find anything that I could harm myself with.  They did search and they found a magazine, “XY”, which is a helpful and supportive gay magazine for gay and questioning males in the age range of 13 all the way up to 25.  After finding the magazine they ask me if I was gay.   That lead to a nervous breakdown because I couldn’t live with myself for being gay and I wasn’t ready for them to know.  My parents however, were okay with me no matter what.  They had always had gay and lesbian friends all their life and have no problem with orientation, race and religion. My parents joined PFLAG and other activities. Even though I knew, this it didn’t give me any internal comfort and the struggle I had became more intense.

I went to IYG (Indiana Youth Group which is for gay & lesbians, transgender, people who were questioning and straight people). In order to go to IYG yours parents had to sign a form and the age was 13 to 21. I worked at the University and started going to the Queer Resource Center and functions at the University.  When high school started back I found myself having no friends initially. Not only did my best friend start treating me bad and our friendship ended, he told others and then I started receiving instant messages that were not at all nice and were completely negative and derogatory, then one had told me to go and kill myself. Then another friend was okay with it, however he found a girlfriend, and she didn’t want us to be friends nor did she want him to spend time with his other friends. So in high school I was working at the University and my friends were college freshmen. Even though I started meeting other gay & lesbian people, I still struggled and had more suicide attempts. After the instant message I decided to take my life, it really got to me and it wasn’t the first message I had received.  I got derogatory and vulgar text messages and phone messages which then I had to change my phone number. For years I felt alone and no social life even today I get lonely with no one to hang out with.

I started to get somewhat of my life back when a terrible accident happened to me. I was burned 3^rd degrees over 31% of my body from my waist up and I had to be airlifted to Wishard Burn Unit and I was still fully conscious until the airlifting. That resulted in 3 months in the hospital and after that followed grueling months of physical therapy, burn suits, mask and more lotions and creams than you can imagine. I had to have multiple major surgeries in the few years following the initial burns. This was the worst physical and psychological event that I have ever experienced. Again the depression came on full force. I want the scars to go away but I know they will be with me. I have come a long way; most people tell me that they can’t even tell that I was burned so severe. However, I can and that adds to my thoughts will I ever find anyone for me since in general the gay population puts a lot of emphasis on looks for first impression instead of getting to know me.  I currently still have some upcoming surgeries. I go through weekly laser and injection treatment to help with the scarring to try to get my body physically as close to as it was before the burns.

Post burns when I had fallen to the lowest point I had heard the song “How to Save a Life” from the band The Fray. I had told my mom that there was a story and a group linked to the song. At that point she then had already emailed every talk show host and got no response.  I didn’t know it at the time, but she was trying to find me help as well as the rest of my family.  She then went to the web site for the Save a Life Campaign and read all about them and the tragedy their family went through. She wrote some of my story to them hoping and praying with so much desperation that someone would respond. Thankfully she got a call. Dave Fahrenkamp himself called and talked with my mom and wanted to help however he could.  When she told me that she got a call I couldn’t believe it, she couldn’t either. After talking with him within 24 hours of her email he wanted to meet me as soon as possible.  Within a week Mr. Fahrenkamp drove to Indiana and met with me and my parents.  Mr. Fahrenkamp gave me hope and helped realize that as long as you are still alive there is hope. I was amazed beyond belief and it was a huge surprise that he came. He made me feel special and that I mattered and he didn’t even know me. He promised no matter how long it took me to get to St. Louis he would be waiting for us to meet other people with the Save a Life Campaign.

Well, he kept his promise.  After two major surgeries and the loss of a family member and a close friend who died in a car accident. I was finally able to get to St. Louis. I was not only welcomed but treated with such respect and kindness that you only feel with family and life-long friends. Yet, I was a complete stranger. The awesome experience of being around a generous and loving group of people who are willing to open themselves up and invite you into their family is one of the best feelings and surprises that a person could experience. The Save a Life family has saved my life by renewing hope and giving me the courage to do the right thing. They all have made me feel like I have someone to connect with. My mom and I have been to St. Louis a couple of times and it has been some of the most terrific and memorable times of my life.

I’m now a volunteer EMT which is a passion of mine.  I went to school and learned the knowledge and acquired the skills to get my certification. I am paying it forward; even though I am helping others I feel the experience gained through my time-consuming volunteering is a reward. I feel like I do have a purpose and it is helping others directly, or indirectly and directly is so far from my experiences is the most internally rewarding.  However, I had to learn that before I could save anybody else’s life, I had to save my own first!  I am evaluating several possibilities; one of those is going on to be a Paramedic, or going back to college. I don’t believe that I would be where I am today without the support of my family and The Save a Life Family for believing in me when I didn’t. My family and I are so grateful to everyone involved with the Save a Life Campaign.

Forever Thankful,

22 y/o Male from Indiana

‘When not interfered with by  outside influences, everything nature does, is  done with perfection. Yet my son, Shay,  cannot learn things as other children do. He  cannot understand things as other children do. Where  is the natural order of things in my  son?’

The  audience was stilled by the query.

The  father continued. ‘I believe that when a child  like Shay, who was mentally and physically  disabled comes into the world, an opportunity to  realize true human nature presents itself, and  it comes in the way other people treat that  child.’

Then he told the following  story:

“Shay and I had walked past a park  where some boys Shay knew were playing baseball.  Shay asked, ‘Do you think they’ll let me play?’  I knew that most of the boys would not want  someone like Shay on their team, but as a  father I also understood that if my son  were allowed to play, it would give him a  much-needed sense of belonging and some  confidence to be accepted by others in spite of  his handicaps.

I approached one of the  boys on the field and asked (not expecting much)  if Shay could play. The boy looked around for  guidance and said, ‘We’re losing by six runs and  the game is in the eighth inning. I guess he can  be on our team and we’ll try to put him in to  bat in the ninth inning.’

Shay struggled  over to the team’s bench and, with a broad  smile, put on a team shirt. I watched with a  small tear in my eye and warmth in my heart. The  boys saw my joy at my son being  accepted.

In the bottom of the eighth  inning, Shay’s team scored a few runs but was  still behind by three. In the top of the  ninth inning, Shay put on a glove and played in  the right field. Even though no hits came his  way, he was obviously ecstatic just to  be in the  game and on the field, grinning from ear to ear  as I waved to him from the stands.

In the  bottom of the ninth inning, Shay’s team scored  again. Now, with two outs and the bases  loaded, the potential winning run was on base  and Shay was scheduled to be next at  bat. At this juncture, do they let Shay  bat and give away their chance to win the  game?

Surprisingly, Shay was given the  bat. Everyone knew that a hit was all but  impossible because Shay didn’t even know how to  hold the bat properly, much less connect with  the ball. However, as Shay stepped up to  the plate, the pitcher, recognizing that the  other team was putting winning aside for this  moment in Shay’s life, moved in a few steps to  lob the ball in softly so Shay could at least make contact. The first pitch came and  Shay swung clumsily and missed. The  pitcher again took a few steps forward to toss  the ball softly towards Shay. As the  pitch came in, Shay swung at the ball and hit a  slow ground ball right back to the  pitcher. The game would now be  over.

The pitcher picked up the soft  grounder and could have easily thrown the ball  to the first baseman. Shay would have  been out and that would have been the end of the  game. Instead, the pitcher threw the ball  right over the first baseman’s head, out of  reach of all team mates.

Everyone from  the stands and both teams started yelling,  ‘Shay, run to first! Run to  first!’

Never in his life had Shay ever  run that far, but he made it to first  base. He scampered down the baseline,  wide-eyed and startled. Everyone yelled,  ‘Run to second, run to second!’

Catching  his breath, Shay awkwardly ran towards second,  gleaming and struggling to make it to the  base. By the time Shay rounded towards  second base, the right fielder had the ball .  The smallest guy on their team who now had his  first chance to be the hero for his  team.

He could have thrown the ball to  the second-baseman for the tag, but he  understood the pitcher’s intentions so he, too,  intentionally threw the ball high and far over  the third-baseman’ s head. Shay ran toward  third base deliriously as the runners ahead of  him circled the bases toward home. All  were screaming, ‘Shay, Shay, Shay, all the Way  Shay’

Shay reached third base because the  opposing shortstop ran to help him by turning  him in the direction of third base, and shouted,  ‘Run to third! Shay,  run to third!’ As  Shay rounded third, the boys from both teams, and the spectators,  were on their feet screaming, ‘Shay, run home! Run  home!’ Shay ran to home, stepped on the plate, and was  cheered as the hero who hit the grand slam and won the game for his  team.

‘That day’, said the father softly with tears now  rolling down his face, ‘the boys from both teams helped bring a  piece of true love and humanity into this world’.

Shay didn’t  make it to another summer. He died that winter, having never  forgotten being the hero and making me so happy, and coming home and  seeing his Mother tearfully embrace her little hero of the  day!”

I recently began my way to “change the world” called Turtle Grass Innovations. I started it because I have been suicidal, and had some pretty bad things happen, but I wanted to help stop things like that from happening. Even though I may not be fully healed myself, I want to change the world by helping others.

I called it Turtle Grass Innovations because turtle grass is a type of seagrass commonly found in Florida that typically has deeper roots than any other seagrass, and I want to dig deeper in my efforts to change the world. I believe that if you touch or change one persons life, you are changing the world.

I made a video about my story, but I based it more around Sexual Assault Awareness. To view my video, please visit:

http://www.youtube.com/watch?v=Ndl1T_1fb8s