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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

$5,276

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

  • Jamie-Lee Josselyn

    $25

  • Maria Paul

    $50

  • Marlene Mangan, former teacher -Pioneer

    $25

  • Rina Lobell

     

  • Cynthia Parks

    $50

  • The Stephans

     

  • Adam Somma

    $100

  • Toledo Winovich Family

    $100

  • Bob and Ruth Read

    $50

  • Becky, Dutch & Atticus

    $200

  • Craig Dunham and Caryn Rubinoff

    $100

  • Chris and Lisa Riedel

     

  • the Lobell family

    $100

  • Paul & Petra

    $50

  • Sarah & Carmen

    $50

  • Linda Brown

    $100

  • Rachel Read

    $25

  • Lauren Lucci

    $25

  • Christina Zanic

     

  • The Farbacher’s

    $50

  • Deb Insana

     

  • Sara Reiter

     

  • Michele de la Reza and Peter Kope

    $100

  • Elizabeth Moir

     

  • Matt and Brenna

    $100

  • Marianne & Lou

     

  • Darlene Polinski

    $25

  • Kim Beck

    $50

  • Lucy Truschel

    $25

  • Meredith Gibbon

    $25

  • Kum Jamie Lannister

    $100

  • John Mike & Maria Summers

    $25

  • Tyler

     

  • The Goldens

    $50

  • Daniel Markoff

    $50

  • Paul Karas

    $25

  • Leo & Natalia Petrulli

    $25

  • Hilary

     

  • DanelWin

    $25

  • Martha Mccarthy

    $50

  • Greg Voelker

    $100

  • Tyler, Elaine, Shelby and David

    $25

  • Colleen O 'Hara

    $25

  • Kathy and Teresa

    $50

  • Custom Ink LLC

    $20

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106% Raised of $5,000 Goal

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

Custom Ink LLC

Custom Ink LLC

DONATION: $20

2 months ago

Kathy and Teresa

Kathy and Teresa

DONATION: $50

Never forget Max and Toby! 2 months ago

Colleen O 'Hara

Colleen O 'Hara

DONATION: $25

2 months ago

Tyler, Elaine, Shelby and David

Tyler, Elaine, Shelby and David

DONATION: $25

Happy Birthday, Megan...you go, girl! 2 months ago

Greg Voelker

Greg Voelker

DONATION: $100

3 months ago

Martha Mccarthy

Martha Mccarthy

DONATION: $50

3 months ago

DanelWin

DanelWin

DONATION: $25

3 months ago

Hilary

Hilary

3 months ago

Leo & Natalia Petrulli

Leo & Natalia Petrulli

DONATION: $25

3 months ago

Paul Karas

Paul Karas

DONATION: $25

Good luck kid! 3 months ago