The Story of CureDuchenne

Imagine having a beautiful baby boy.  For four years, your child thrives and is the light of your life.  One day you notice he has difficulty standing up.  His calves are swollen, and he can’t keep up with other children.  You take him to his pediatrician, who says he’s probably just a slow starter and not to worry. 


At five, you finally find a specialist that gives a proper diagnosis…Duchenne muscular dystrophy.  You’re told his muscles will die and not regenerate.  He will be in a wheel chair by 12 and that historically DMD boys do not survive their teens.  You find out DMD is the leading genetic killer of children and that two boys die of DMD every day. You scream frustration as to why you haven’t heard about Duchenne before?

You find out that DMD is an “orphan” disease and that pharmaceutical companies do not invest in bringing cures to market because the number of potential users does not make it profitable enough. 

So, for the love of your child, you take matters into your own hands and embark on a path to affect change … to raise the funds needed to find a cure within your son’s lifetime.

 

CureDuchenne was founded by Paul and Debra Miller whose son was diagnosed with DMD in November 2002.  Paul is a vice-president of a food company and Debra was in advertising sales before giving up her career to be a stay-at-home mom. Paul and Debra are confident that their business backgrounds will enable them to effectively communicate the need for awareness and funding for Duchenne muscular dystrophy.

“Our confidence also emanates from a strong Christian faith and a belief that God presents us with opportunities to help other people. When we got our son’s diagnosis, the pain was unbelievable.  We always had faith, but we never truly knew how much we would have to rely on God.  Our hope is that everyone confronted with this devastating news will receive the constant comfort that our faith has brought us.  We respect and welcome people of all faiths and beliefs to our organization.  Saving these boys and sharing our faith has become our life’s work.”

 

Contact Information:

 

CureDuchenne

3334 E. Coast Hwy.  #157

Corona Del Mar, CA  92625

949-721-4063

Debra.CureDuchenne@adelphia.net

 

Federal Tax ID, 501(c)(3):  20-0299958

 

 

Our Vision is our name ... to cure Duchenne muscular dystrophy.  Our mission is to save THIS generation of Duchenne boys ... with your help.

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