Scooter PDF Print E-mail

Thank you so very much Jen Tresh and the Elena Tresh Foundation for sending an electric scooter to our little Evan. The scooter will help protect his muscles from overuse and help to slow the progression of Duchenne. Because we are in a race against time to find a cure, (Duchenne is 100% fatal by late teens to early twenties), slowing the progression is all we can do right now. He absolutely loves the scooter. We took it to school today for him to practice in the hallways. All his friends thought it was cool!!  

 

 
Weehoo! PDF Print E-mail

Evan riding his Weehoo Sept 2011

 

 Since Evan's 2008 diagnosis, we've struggled to keep life as normal as possible.  A big part of that process has been including him in everything we do as a family.  What he can't do, we don't do. Up until last year, our bike rides have included Evan on a classic toddler seat, attached behind my seat. But he was getting just too big for it, and his little legs were all crunched in behind my seat.  Thankfully though, we found this wonderful new product called a "Weehoo i Go". 

As you can see in the picture, it is a one wheeled bicycle trailer, attached to the bike seat post by a long swing arm,  which safely  provides Evan with the feeling of riding a bicycle without subjecting him to muscular over use and subsequent muscle cell damage from excessive peddling. (Not to mention the risk of a fall, or broken bone).  Evan absolutely LOVES his Weehoo.  He especially loves the feeling of independence from the my bike.  His feet are held in place with velcro straps, on working pedals.  Sometimes he pedals, sometimes he just sits back and enjoys the ride.  He also likes the feeling of being so close to the ground.  There are safety harnesses which hold him securely into the seat, and handle posts with grips on either side of his seat.  

The folks at Weehoo are aware of our struggle with Duchenne, and extremely compassionate. This is a heavy duty piece of equipment which we now take everywhere.  The Bike costs $398 dollars, and is simple  to connect.

 Check out their web site.  There are videos of it in action posted as well.

http://www.weehoobicycletrailer.com/
 
Exon Skipping Clinical Trial PDF Print E-mail

  After a lengthy physical screening process, Evan has been chosen to be one of 12 boys to participate in AVI's upcoming Exon Skipping trial at Nationwide Children's Hospital in Columbus, Ohio. He begins next week.

Exon Skipping is, in layman's terms, a genetic Patch that will theoretically bridge over his out of frame gene, allowing his body to read through the mistake, hopefully resulting in the production of the missing protein, "dystrophin", (albeit, a shortened and less abundant version). Dystrophin is like a long zigzag of a protein, which acts as a sort of shock absorber (among other things), protecting the muscle cells from shock.  Duchenne boys don't have it.  Their muscle cells fracture, leak, and fall apart when stressed.   They become replaced by scar tissue.

Leaving this Sunday, August 14th, we will be flying Evan from Florida to Ohio where he will undergo a muscle biopsy Monday, and receive his first IV infusion on Wednesday.  We won't know whether the infusions will be placebo, or the real drug, for the entire 6 months, but we've decided it is worth it, and nonetheless, a step forward for Evan and Duchenne children in general.  We are excited, anxious, nervous, optimistic, and of course, sick with worry for Evan and the 6 months of upcoming medical procedures he will be facing. No one really knows if this will work.

If this trial is a success, Exon Skipping may help extend Evan's lifespan.  It is not however, a cure for Duchenne.  His form of Duchenne would be reduced in severity to a lesser form, called Becker's, which comes with a long list of cardiac issues and disbility.  But it could buy us precious time for a cure.

Thank you to all who have donated or spread awareness of this cause.  Without donations from the private sector, this trial may have not moved along this quickly. A delay of a year or two or five.....may mean the difference between life and death for Evan. .  

 

 

 

 
Peace In Any Language PDF Print E-mail

Research with gene therapy is  incredibly promising.  The science is in place to not only slow down this monster, but actually cure it.   Funding remains the biggest question and road block to realizing those dreams for Evan.  Bill and I have understood this and have been literally pounding the pavement asking for donations beginning when Evan was first diagnosed two years ago.   Donations have since drastically slowed due to our economy.   This is frightening to us.   We wonder if what is happening on a small scale to us could be happening on a larger scale to Duchenne Research.  Bill and I also feel frustrated about not being able to provide Evan with things he needs example...an elevator of some kind to get him up and down the stairs that lead to our home.  Taking some type of positive action is the only way to change any situation (Extraordinary Measures - Recent Harrison Ford movie completely describes our situation).  People have responded kindly to our pleas and they are forever in our hearts.  But so much more is needed. The stress of living in uncertain times, the threat of terrorism and war directly affect our economy.  Perhaps peace is what we need.  Peace of mind and body.  Inner peace as well as peace among us.   Perhaps then people could feel more free to focus on helping others.  Bill and I  built a web-based company called Peace In Any Language.  It is a world peace t-shirt company that focuses on printing the word "peace" on t-shirts in any of over 300 languages.  Bill is credited with this idea.    I racked my brain and kept coming to him with ideas.  I guess it was after my "let's sell Spanish moss!" idea he felt he had to stop me and was inspired to come up with the peace t-shirt idea.   It is our desire to direct a portion of all proceeds to Cure Duchenne. Because our company is only a few months old,  the portion currently donated to Cure Duchenne is 10% of profits. The rest is goes back to pay for start up costs.  Hopefully it will become successful and allow us to pay for Evan's needs while significantly increasing the percentage we are able to donate to Cure Duchenne . Funding research is Evan's only hope.  The science is in place to find a cure for him, it is only delayed by funding.  It is really just that simple.   "Peace" means many things.... free from turmoil,  anxiety and war... free from Duchenne. 

www.peaceinanylanguage.com

 
At the Top! PDF Print E-mail

Cure Duchenne Mt Rainier Climb

 

 

 

 

 

 

 

 

 

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:

Choose a mountain, hill or summit...whatever it is you want to climb... in your own state. Represent your state in the "2010 Climb to Cure Duchenne".  We are looking for someone from each of the 50 states to participate. This doesn't need to be "Mt. Rainier "with ropes, ice axes, and a year of prep training.  Simply contact Cure Duchenne, "pick your peak" in your home state, and you may be on next year's national "Climb to Cure Duchenne" team. 

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

 
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