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Megan Rindfuss' Fundraiser:

Project Alive

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Megan's Photo
Megan's Photo
 

Our team is growing!
December 23, 2017

Thank you so much for your support. I am pleased to report that many of Max and Toby's caregivers and family members have joined our team and  See more
Megan Rindfuss

THE STORY:

The caregivers of Max and Toby MacDonald Mingo have created this funsraisder to raise awareness about 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 us more about life than we'd ever learn in a textbook. They showed us the meaning of unconditional love and how to live every day like it's your last. We are truly greatful for our  time spent with them. We am running the 2018 Dick's Sporting Goods Pittburgh Marathon, Half Marathon, and Marathon Relay to raise Money for Project Alive, to help other boys with their fights with MPS2/Hunter Syndrome.

DONATE

To This Fundraiser

$2,895

MONEY RAISED
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  • Dustin

    $150

  • Dana Winowich

    $25

  • Zoran, Jen and Katarina Ristic

     

  • The Brateks

    $50

  • Magz

     

  • Colleen Silky

    $25

  • Jeff-Janice-Natalie-Grace Dean

    $25

  • Mike and Chris Lucci

     

  • Kathy Matesic

    $50

  • Corinne Burns

    $10

  • Diana & Teddy

    $50

  • Aunt Debbie

    $100

  • Clare Lozano

    $25

  • Christian Pegher

    $50

  • The Altes’

    $25

  • Polinski Family

    $50

  • Oka Tai-Lee

     

  • Uncle Jim and Aunt Barb

    $200

  • Jess Walls

    $25

  • Virginia Knox

    $25

  • Uncle David & Aunt Bonnie

    $25

  • David & Zoey Wilson

    $100

  • Scott Rsppe

    $100

  • Roger and Amy

    $200

  • Dana Clemson

    $25

  • Tom & Janice Rindfuss

     

  • Vincent Defebo

    $25

  • Mitch and Sally O'Neill

    $50

  • Dutch MacDonald and Becky Mingo

    $500

  • Laurie

    $50

  • Bob & Ruth Read

    $50

  • Courtney Fuhrman

    $15

  • Michele de la Reza and Peter Kope

    $50

  • Sarah Farbacher

    $25

  • Darlene and David Stotka

    $100

  • Mary Beth Gibbon

     

  • Bette Overmier

    $25

  • Don & Leslie Overmier

    $100

  • Anonymous

    $25

  • Darlene Defebo

     

  • Lisa DeRose

    $20

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58% Raised of $5,000 Goal

Fundraise for this Campaign

The Team: $2,895 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Megan Rindfuss

Amount Raised

$2,620

 

52% Raised of $5,000 Goal

Fundraiser Title

Becca Overmier

Amount Raised

$125

Fundraiser Title

Brittany Stotka

Amount Raised

$100

Fundraiser Title

Maddie Brown

Amount Raised

$50

Fundraiser Title

Kelly Porter

Amount Raised

$0

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Emily Parks

Amount Raised

$0

Fundraiser Title

Jessica Walls

Amount Raised

$0

Donor Comments

Lisa DeRose

Lisa DeRose

DONATION: $20

In loving memory of our Max & Toby 3 hours ago

Darlene Defebo

Darlene Defebo

In memory of Max and Toby In honor of Megan Rindfuss 20 hours ago

Anonymous

ANONYMOUS

DONATION: $25

3 days ago

Don & Leslie Overmier

Don & Leslie Overmier

DONATION: $100

4 weeks ago

Bette Overmier

Bette Overmier

DONATION: $25

1 month ago

Mary Beth Gibbon

Mary Beth Gibbon

2 months ago

Darlene and David Stotka

Darlene and David Stotka

DONATION: $100

In memory of Toby and Max 2 months ago

Sarah Farbacher

Sarah Farbacher

DONATION: $25

2 months ago

Michele de la Reza and Peter Kope

Michele de la Reza and Peter Kope

DONATION: $50

Thank you for all for your abounding love and dedication to Max and Toby. 2 months ago

Courtney Fuhrman

Courtney Fuhrman

DONATION: $15

So proud of you Megs ❤️ 2 months ago