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Samantha Stimpson's Fundraiser:

Support James/ DUP 2 Families

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Thank you!
April 10, 2017

We would like to thank everyone who came to our event, donated, and sponsered. We had a great time. James was so excited to see his friends,  See more
Samantha Stimpson

THE STORY:

Our 6 year old son, James Ramirez, has recently been diagnosed with Duchenne Muscular Dystrophy. His pediatrician recommended getting a blood test done to see if he had a muscle wasting disease. We were thinking, why?, he is just little. July 26th 2016 I took him to the local hospital for blood work. Later that day, his pediatrician called me and said they needed to talk to us. He said he had elevated blood levels and he thought it could be Duchenne. I had no idea what it was. He told me he would probably need a wheelchair by the time he was 12 and his life expectancy was 20 to 30 years. James was with me at the time, I had to look away and just  keep it together. But we knew from the start, we have to be strong, for him. We took James to UNC in August to have a genetic blood test done. I got the call on September 6th, 2016 confirming his diagnosis of duchenne with a duplication of exon 2. It was his first day of kindergarten when we got the news. We were devastated. Not only us parents but all of our family and friends. We don't know what we would have done without them. We immediately started researching. I came across CureDuchenne and PPMD.  Their sites kept us up to date on research and trials. I also became friends with other DMD families and that helped alot as well. We started going to Duke and learned they were one of PPMD's official duchenne hospitals, which was great. His Dr has been wonderful. We decided to stay positive. I've been seeing good signs. Something should be available in time for James. It is so much different than it used to be. So many boys have been taken by this terrible disease because there is no cure. God bless them all.  But maybe, since James is still young, he may have a chance.  CureDuchenne was having a conference in Charlotte. We are so glad we went. We learned a lot from that and it was nice to have so much support. With them, our Doctors,our family and other families we felt like maybe we can beat this. The next day after his diagnosis was world duchenne awareness day. A week later or so, Eteplirsen(exondys 51) was approved. I had researched this drug, and I knew it was helping. It only helps 13% of boys with duchenne but it is a huge step forward. With that being approved it would open the doors for other drugs for all with duchenne.  Dr Flanigan at Nationwide Children's Hospital has developed a drug that skips over the first 5 exons in the dystrophin gene. We were aware of his research but didn't realize they were so close. This is it, this is what he needs. It would not only help James, but many other boys.  The only thing holding them back now is funding. The initial goal is $800,000 so they can start the clinical trials by January 2018. The funds needed are for a toxicology report and a biodistribution study.  It could save his life.  The sooner he gets treated, the better. Right now James can still walk and do lots of things. However, he falls quite often, he can't walk very far, and he has a hard time getting up and down. It is so difficult seeing your child struggling when there is nothing you can do. I'm seeing it get worse little by little.  I hope and pray that James can get treatment in January before he gets even worse. We need lots of help on this. If this drug works, it would help open the door for other drugs as well.  Every person with duchenne is in a race against time. They all need treatment now. I believe together, we can Cure Duchenne. Thank you for your support. Samantha Stimpson Shaun Ramirez

DONATE

To This Fundraiser

$11,035

MONEY RAISED
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  • Samantha Stimpson

    $500

  • Lisa biamonte

    $20

  • Bill and Margie

    $100

  • Judy Sloan

    $50

  • Anonymous

    $100

  • Amanda

    $50

  • Anonymous

    $250

  • Anonymous

    $100

  • Becky Wentworth-Kuhn

    $25

  • Judy Sloan

    $50

  • Janet

    $200

  • Sharon Tompkins

    $50

  • Anonymous

    $100

  • Support James Checks

    $120

  • Support James Event

    $8,820

  • Anonymous

    $500

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22% Raised of $50,000 Goal

Fundraise for this Campaign

The Team: $11,035 TOTAL RAISED SO FAR

JOIN THE TEAM

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Donor Comments

Anonymous

Anonymous

DONATION: $500

12 months ago

Support James Event

Support James Event

DONATION: $8,820

12 months ago

Support James Checks

Support James Checks

DONATION: $120

1 year ago

Anonymous

Anonymous

DONATION: $100

1 year ago

Sharon Tompkins

Sharon Tompkins

DONATION: $50

1 year ago

Janet

Janet

DONATION: $200

1 year ago

Judy Sloan

Judy Sloan

DONATION: $50

1 year ago

Becky Wentworth-Kuhn

Becky Wentworth-Kuhn

DONATION: $25

1 year ago

Anonymous

Anonymous

DONATION: $100

1 year ago

Anonymous

Anonymous

DONATION: $250

1 year ago