We summitted Mt. Rainier on September 1st!    To date, this climb has raised over $160,000.00 for Duchenne research, subsequently raising awareness through television, newspaper and internet media around the world. Pictured, are six of the climbers who made it to the top, (L - R) Chris Schauf,(Minnesota) Bill Procko, (Florida), Barry Byrne,(Florida) Thomas St. Claire,(California), Zach Schauf,(Minnesota), and Paul Miller, (California).

Only seven Months before this photo was taken, I woke up in my tent in the middle of a winter night, alone in the mountains, with an idea. The lesson to be learned from this photo, is that anyone can turn a crazy idea into something that can change the world.  If I would have simply dismissed the idea as crazy, or too difficult, and gone back to sleep, there would be $160,000 dollars less, and thousands of people less, helping to find a cure for boys with DMD.  Anything is possible. Set your ideas in motion.  Duchenne boys are depending on us to join hands and work for them ,to live and realize their dreams.  They are our future Presidents, doctors, entertainers, and Dads.  They're too young to fix this themselves. 

If you are touched by our story..If you are the parent of a boy with DMD and want to feel like you have some sense of power in this "mountain" of a struggle to find a treatment or cure, If you know of someone who is affected..If you feel helpless to change things..............then,I have another idea:

Next summer, during the same week, you will be joined by parents in every state, all climbing or hiking to a high point, to Cure Duchenne.  Between now and next summer, each participant will raise $5,000 dollars for Duchenne research. This is not a lot to raise in 9 or 10 months. You would be amazed at how easy this can be! You can recruit as many people as you'd like, to help raise the money. Contact Sean Marshall at Cure Duchenne.  He'll set you up with your state's official "Firstgiving" donation site.  Then, all you have to do is pick a peak or high point that you would like to climb next summer, and post it on your custom made-free donation site..It's literally "turn key"!!  Cure Duchenne will send you your state's "2010 Climb to Cure Duchenne" banner.  . 

The math is pretty simple...with relatively small amounts raised in all 50 states duchenne research will receive $250,000.00 more dollars. More if we can get more participants from each state.  Activate yourself now and be part of our 2010 Climb to Cure Duchenne! 

 Click to see footage of the climb. http://www.youtube.com/watch?v=GbZw8KXDg44

This is a picture of me with my son Evan, 5, who has Duchenne. I am carrying him on my back for two reasons...

1) His leg muscles are not strong enough to climb and I want him to experience the joy of being on a mountain top. 2) I am training for the climb of my life. I am climbing Mt. Rainer at the end of August. Only 50% of climbers who try, summit this mountain. Yet, those odds are so much better than my son faces with Duchenne. It is 100% fatal.

What do you do when you find out your son has a 100% fatal disorder? His little body will only get weaker from this moment on. How do you accept that you have maybe 15 more years until ... if your lucky? When he leaves in the morning, proudly wearing his Thomas the Train book backpack, excited about going to school...and as you smile and wave, a knife digs into your gut...because you know something he doesn't...most boys with Duchenne wont live long enough to finish school. How do you get used to that?? He's energetic, silly, imaginative, independent, playful, loving and full of life. He tells you his dreams of what he wants to be when he grows up. When he asks you questions like "Can I drive you around when I grow up?...how do you answer his happy blue eyes. How do you sleep when you think about how his big brother, Billy, 8 will suffer when he finds out that his best friend and only sibling will not survive to adulthood with him.

My name is Bill Procko. The only thing I can do is try to stop this nightmare by getting money to the scientists who are working on a cure. My wife and I are constantly trying to raise money and awareness. It is a mountain we are both climbing. Many times we fall and have to rescue each other. We keep going because we believe we can get to the top. We believe Evan will not have to realize the horror ahead if we can successfully wake up the world to this disorder and channel money into research. I am climbing to get the media's attention and direct funding to research that will save my sons life.

My wife and I don't have wealthy connections to help us. Fundraising has been very difficult. We are constantly pouring our hearts out to ask for help. Our goal is to raise dollars equal to the elevation of the climb, ($14,411 per climber). Our team of 12 hopes to raise around $170,000. Some members of our team our very close to their goal. So far, I personally have only been able to raise $7,000. Many are sympathetic and promise help but in the end... they are silent. Please, if you can, extend your hand to mine and help me up this mountain by donating to my web link: http://www.firstgiving.com/williamprocko. You can also follow me on Twitter under "cureclimber".

Evan- Pre- K Pirate Anne Heche & Kim

I hear a little boy's low raspy voice ..., "Say your prayers boy" followed by chaotic sounds of intense proportion. I look up to see Evan playing with his pirate ship. I stop to watch him. His face is twisted in a scowl and his blue eyes are fierce. His imagination is played out in every detail. He is beautiful. And, while I am enjoying the moment, I am burdened by sickening knowledge. If his disorder is allowed to progress....,he will lose the ability to command his little arms and fingers to play out his imagination. He will lose the ability to walk to his toys and sit down on his own, to play with them. He is my son. I know his dreams and fears. I hug him and his little arms squeeze my body tightly. They are strong now. How much longer he will be able to give me that hug, I do not know. I only know, it too will be taken away.

The Celebrity Auction event was huge and brought in $150,000 for Duchenne. That is a wonderful ,amazing thing during these economic times. We met Anne Heche and Hollywood producers Chris Moore and Jenno Topping. They were very approachable and listen to us talk about our experience with Duchenne and how hopeful we are with the current research and its desperate need for funding.

There are potential therapies in current research trials, which may help if released soon enough. If you can only give $10 dollars, then that is 10 votes my son will live. Please do it now. Research will slow or speed up depending on the dollars they receive today.

Evan , 5, during a recent visit to the beach.

Evan is doing great in Pre-K. Next year, I look forward to having him in my Kindergarten class. Everyday I see him becoming more independent. Two days ago, I found him in the kitchen making himself a peanut butter sandwich. He had pulled his stepping stool all the way from bathroom to the kitchen and was going to town. When he caught me looking at him, he asked if I would like one as well.

Along with his independence, we notice his motor skills and strength improving with the steroids. I saw him jump, both feet off the ground for the first time today. It was amazing. I was pretending to be the basketball hoop. He jumped up and slam dunked the ball through my arms. I don't know if he realized he had jumped. It was just effortless. I loved seeing him experience that, but at the same time, we can't encourage him to keep jumping, as the shock to his leg muscles will speed muscle degeneration.

He knows he is different. He recognizes that the other kids are stronger and are allowed to do more physical things than he. But, I know it hasn't yet stolen all his confidence in himself. Just before his Pre-K Easter egg hunt was to begin, holding his empty basket he looked up at me with his intense blue eyes and said "I'm going to win this thing".

To see Dr. Hoffman speak, click on the link below.
http://www.mda.org/research/090316dmd-exon-skipping.html