So the phone call came and I said yes. I'm going to jail to help support the Muscular Dystrophy Association. Actually, I'm attempting to raise $1600 bail money to support the MDA. That's where you come in. You can click here and help this cause. So far I only have $50, so any support you add would be greatly appreciated.
I remember watching Jerry Lewis every year as a kid, raising money for MDA. the need has not gone away, but we can continue to help. I have included a letter I received about one type of muscular dystrophy. Check it out and please donate.
Rick Nier Woo!
Letter of Hope from Casey Van Houten, mother of Blake Van Houten, 2010 Northeast Indiana Goodwill Ambassador
Dear Jailbird,
December 21, 2000 was one of the greatest days of our lives. We welcomed a beautiful baby boy into the world and named him Blake Thomas Van Houten. He sat up, crawled and walked when he should have; he was a perfectly healthy boy. It wasn't until school that the teachers started to notice his physical ability declining. He was not keeping up with the other children and they suggested we take him to be evaluated. We made the appointment and the day after the doctor called requesting us for a meeting. At the meeting he told us Blake has Duchenne Muscular Dystrophy. The doctor also informed us that our younger son Cole, who was three at the time, has Duchenne Muscular Dystrophy too.
Duchenne is one of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles. Duchenne Muscular Dystrophy weakens the muscles and can have the child in a wheelchair by the age of twelve. It is passed from a mother to her son. We didn 't know we were carriers until it was too late. When we heard the diagnosis we were devastated that something was wrong with our child. The worst part about Duchenne is that there is no cure...yet. This is the hardest part as a parent, since you know you can't do anything to make it better for your child.
The doctors told us about the local MDA and their efforts to help find treatments and cures for Duchenne. Once we registered with the local MDA office, and started going to the free MDA clinic we were grateful for the help and support. We hadn't realized how many sponsors, firefighters, and community people volunteer their time to help support the MDA and ultimately our family. It's because of you going out of your way to help make a difference in the lives of all children with neuromuscular disease.
One of the greatest parts about MDA is the annual week long Summer Camp at Camp Potawotami in South Milford. Blake thinks camp is the greatest thing on earth. The week is focused on fun for my Blake and others just like him. The campers get to just be kids and forget about their worries of having a debilitating disease. Blake may have this disease but it does not have him. He is as active as he can be and he loves to play with his friends. He is social, loves to talk and he tries as hard as he can to be "normal". We thank you for helping MDA as they support us through this difficult journey.
Your help is our hope.
Casey and Brian Van Houten
p.s.: Research Update for Duchenne MD - Thirty-two boys with Duchenne muscular dystrophy, who have specific genetic mutations that may be helped by a new approach called "exon skipping" will enter a promising new study. The boys will participate in the study at Nationwide Children's Hospital in Columbus Ohio, with plans to begin in March of 2010. Applicants will undergo genetic testing to determine if they are eligible for the trial. The trial is under the direction of neurologist Jerry Mendell, MD, longtime MDA research grantee and director of the MDA clinic at Nationwide.
For additional information and promising research developments about Duchenne Muscular Dystrophy go to www. mda. org.
I remember watching Jerry Lewis every year as a kid, raising money for MDA. the need has not gone away, but we can continue to help. I have included a letter I received about one type of muscular dystrophy. Check it out and please donate.
Rick Nier Woo!
Letter of Hope from Casey Van Houten, mother of Blake Van Houten, 2010 Northeast Indiana Goodwill Ambassador
Dear Jailbird,
December 21, 2000 was one of the greatest days of our lives. We welcomed a beautiful baby boy into the world and named him Blake Thomas Van Houten. He sat up, crawled and walked when he should have; he was a perfectly healthy boy. It wasn't until school that the teachers started to notice his physical ability declining. He was not keeping up with the other children and they suggested we take him to be evaluated. We made the appointment and the day after the doctor called requesting us for a meeting. At the meeting he told us Blake has Duchenne Muscular Dystrophy. The doctor also informed us that our younger son Cole, who was three at the time, has Duchenne Muscular Dystrophy too.
Duchenne is one of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles. Duchenne Muscular Dystrophy weakens the muscles and can have the child in a wheelchair by the age of twelve. It is passed from a mother to her son. We didn 't know we were carriers until it was too late. When we heard the diagnosis we were devastated that something was wrong with our child. The worst part about Duchenne is that there is no cure...yet. This is the hardest part as a parent, since you know you can't do anything to make it better for your child.
The doctors told us about the local MDA and their efforts to help find treatments and cures for Duchenne. Once we registered with the local MDA office, and started going to the free MDA clinic we were grateful for the help and support. We hadn't realized how many sponsors, firefighters, and community people volunteer their time to help support the MDA and ultimately our family. It's because of you going out of your way to help make a difference in the lives of all children with neuromuscular disease.
One of the greatest parts about MDA is the annual week long Summer Camp at Camp Potawotami in South Milford. Blake thinks camp is the greatest thing on earth. The week is focused on fun for my Blake and others just like him. The campers get to just be kids and forget about their worries of having a debilitating disease. Blake may have this disease but it does not have him. He is as active as he can be and he loves to play with his friends. He is social, loves to talk and he tries as hard as he can to be "normal". We thank you for helping MDA as they support us through this difficult journey.
Your help is our hope.
Casey and Brian Van Houten
p.s.: Research Update for Duchenne MD - Thirty-two boys with Duchenne muscular dystrophy, who have specific genetic mutations that may be helped by a new approach called "exon skipping" will enter a promising new study. The boys will participate in the study at Nationwide Children's Hospital in Columbus Ohio, with plans to begin in March of 2010. Applicants will undergo genetic testing to determine if they are eligible for the trial. The trial is under the direction of neurologist Jerry Mendell, MD, longtime MDA research grantee and director of the MDA clinic at Nationwide.
For additional information and promising research developments about Duchenne Muscular Dystrophy go to www. mda. org.
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