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Maddie Brown's Fundraiser:

Project Alive

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Maddie Brown

THE STORY:

Megan Rindfuss wrote -

In 2013, I took a chance and responded to an ad looking for a home health aide. When I started working for the family of the two young boys who would later change my life, I'd never heard of MPS2, or Hunter Syndrome. "Hunter Syndrome is a rare genetic disease that is progressively debilitating, life-limiting and without a cure. It occurs almost exclusively in males and currently affects approximately 500 boys in the U.S. and less than 2,000 worldwide. Though the disease is present at birth, symptoms become more apparent as the accumulation of GAGs builds within the body, triggering a diagnosis usually between 2 to 4 years old. Most boys with Hunter Syndrome continue to develop physically and cognitively until between the ages 2 and 5 and then begin regressing. These boys gradually lose the ability to talk, walk and eat. Most do not live to see their teen years. Approximately 20% of those affected by Hunter Syndrome do not suffer cognitive impairments or regression and may have normal intelligence but a continuum of physical symptoms." Project Alive is a non-profit organization working to raise funds for a Gene Therapy that could save the lives of boys with Hunter Syndrome. "Gene therapy is a revolutionary approach to treating genetic diseases. It involves a one-time delivery of a normal copy of the defective gene which ideally causes the body to naturally produce the missing enzyme. It is the most promising ‘cure’ that these boys desperately need." Shortly after their diagnosis, Max and Toby began losing their phsycial and cognitive functioning. I watched helplessly for years as both boys lost their ability to talk, play, walk, eat, drink ,and interact with the ones they love. Toby gained his angel wings in May 2015 at 10 years old, and Max gained his in November 2017 at 15 years. Working with Max and Toby taught me more about life than I'd ever learn in a textbook. They showed me the meaning of unconditional love and how to live every day like it's your last. I am truly greatful for my time spent with them. I am running the 2018 Dick's Sporting Goods Pittburgh Marathon to raise Money for Project Alive, to help other boys with their fights with MPS2/Hunter Syndrome.

$300

MONEY RAISED
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  • Laurie

    $50

  • Marlene Mangan, former teacher -Pioneer

    $25

  • Linda Brown

    $100

  • Sara Reiter

     

  • Elizabeth Moir

     

  • Tyler

     

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Fundraise for this Campaign

The Team: $5,276 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Megan Rindfuss

Amount Raised

$4,376

 

88% Raised of $5,000 Goal

Fundraiser Title

Maddie Brown

Amount Raised

$300

Fundraiser Title

Becca Overmier

Amount Raised

$225

Fundraiser Title

Jessica Walls

Amount Raised

$200

Fundraiser Title

Brittany Stotka

Amount Raised

$125

Fundraiser Title

Emily Parks

Amount Raised

$50

Fundraiser Title

Kelly Porter

Amount Raised

$0

Fundraiser Title

Kimberly Sbarra

Amount Raised

$0

Donor Comments

Tyler

Tyler

5 months ago

Elizabeth Moir

Elizabeth Moir

I’m loving memory of Toby and Max Mingo. 6 months ago

Sara Reiter

Sara Reiter

6 months ago

Linda Brown

Linda Brown

DONATION: $100

Max and Toby 6 months ago

Marlene Mangan, former teacher -Pioneer

Marlene Mangan, former teacher -Pioneer

DONATION: $25

Everyday he brought joy into the classroom. 7 months ago

Laurie

Laurie

DONATION: $50

In memory of Max and Toby and in honor of their caregivers. 10 months ago