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Bill Groel's Fundraiser:

Ironman to Support ALD Awareness & Research

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BENEFITING: KENNEDY KRIEGER INSTITUTE INC

EVENT DATE: Jul 26, 2015

Bill Groel

THE STORY:

Hi. Thank you for viewing my fundraising page for Adrenoleukodystrophy (ALD).  Originally, this was developed in support of my first marathon, which I ran to help raise awareness of ALD and to help fund research for this life threatening disorder that affects two of our three sons.

Since then this page has remained active due to the support of friends and family who also want to raise awareness and funds through their own efforts.  Coming up in July, our good friend Kelly Yanek will be participating her first IRONMAN competition in Lake Placid, NY in support of ALD awareness.  If you are able, please support Kelly’s efforts and donate by selecting her name below and hitting the donate button.  Thank you Kelly for being part of the team!

ALD is a rare disorder that affects about 1 in 17,000 boys. Presently there is no cure, but research continues in the use of "Lorenzo's Oil" as a preventative therapy, bone marrow transplants, and gene therapy. There is also an effort to try and get ALD included in the newborn screening panel.

In basic terms, boys with ALD lack the ability to break down very long chain fats. In order to deal with the accumulation of fats, their bodies begin to store them in the adrenal cortex and myelin, which is the protective coating over the brain. This can lead to a progression of neurological issues and death usually within five years from the onset of symptoms.

The Kennedy Krieger Institute (KKI) is one of the organizations that supports ALD research and has been providing support and care for my family and many others impacted by ALD.

http://www.kennedykrieger.org/patient-care/diagnoses-disorders/leukodystrophy/adrenoleukodystrophy-ald

Thank you again for visiting the fundraising page and for your donation.

 

DONATE

To This Fundraiser

$14,622

MONEY RAISED
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  • Aunt Mary Margaret

     

  • Anonymous

     

  • Anonymous

     

  • Brisk Martin

     

  • Pam and Nick Norris

     

  • Pam and Nick Norris

     

  • Nick and Pam Norris

     

  • Onward LLC

     

  • The McKinney Family

     

  • Jesse and Jill Pike

     

  • The Toro Family

     

  • Gonzalez Family

     

  • Bryon and Kathy

     

  • The Dugger Family

     

  • Kay O'Keefe (in memory of Richard O'Keefe and Robby Backenson

     

  • Alma Wright

     

  • Pop Groel

     

  • Bill & Carolyn Groel

     

  • Jim and Patti Pike

     

  • Santiago Quevedo

     

  • Pete & Mary Ann Backenson (in memory of Robby Backenson)

     

  • Linda Howard

     

  • Tricia & Paul Ciaccio

     

  • Matt & Amy McClellan

     

  • The Stewart Family

     

  • Bill Groel from Booster

     

  • Greg and Renee Howard

     

  • Diane Kane - Run for ALD

     

  • Cynthia & Bruce Nutt

     

  • Troy & Emily Reimer

     

  • Michele Butler

     

  • Anonymous

     

  • PJ and Angela Block

     

  • Tamara and Ian Wadsworth

     

  • The Fenwick Family

     

  • Lucy, Eamonn, Niall, Fran and Will xx

     

  • David and Teresa Bradley

     

  • Lindsay Elliott

     

  • The Estevez Family and The Uruchurtu Family

     

  • Paul Swartz

     

  • Rebecca Baird

     

  • Alexandra Harvey

     

  • Michael & Claire Fricko

     

  • The Bard Family

     

  • Jackie, Chris, Evan and Max Koczan

     

  • Burton Buffaloe

     

  • The Corba Family

     

  • Strevens Family

     

  • Mark & Karen Kiep

     

  • Jerrie and Nick Collins

     

  • David and Nancy Buffaloe

     

  • Anonymous

     

  • Jenn and Chris

     

  • Vijay & Sonia Rajaji

     

  • Bill and Kate

     

  • Brian and Marg Allen

     

  • The OLL family

     

  • Jennifer Kashani

     

  • The Gradel Family

     

  • Brown Family

     

  • Karen Reiter

     

  • Esther McKenna

     

  • Ann Marie McKay

     

  • The Rettigs

     

  • Terri Klemm

     

  • Lynn and Bob

     

  • Jack & Barbara Lenigan

     

  • Vicki, Ed and Winnie Schaffer

     

  • The Vakiener Family

     

  • Denise Dawson

     

  • John and Clarissa

     

  • Aunt Mary Margaret

     

  • Lori Rowe

     

  • Lisa Schaeffer

     

  • The Zook Family

     

  • Gamba Family

     

  • Erica

     

  • The Bowen Family

     

  • jennie scarpato

     

  • Tom & Brooke Backenson

     

  • Carol & Bill Groel

     

  • John & Lori Schultz

     

  • Mary Ann & Peter Backenson

     

  • Angelo & Christina

     

  • Lori Bortolot

     

  • Kim Cannell Navan

     

  • Dean Hutch

     

  • Lisa Pickett

     

  • Jennifer Hupp

     

  • Jackie Fives

     

  • Lori Wells

     

  • The Schwartz Family

     

  • Karen

     

  • Alanna

     

  • Heather Fraunberger

     

  • Margie & Ed McFadden

     

  • Kim & Liana

     

  • Bill and Kate Groel

     

  • Kay O'Keefe

     

  • Stacey Friedman Stella & Dot Fundraiser

     

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146% Raised of $10,000 Goal

Fundraise for this Campaign

The Team: $14,622 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Bill Groel

Amount Raised

$8,377

 

84% Raised of $10,000 Goal

Fundraiser Title

Kelly Yanek

Amount Raised

$2,690

 

191% Raised of $1,406 Goal

Fundraiser Title

Carlos Cantu

Amount Raised

$2,555

 

256% Raised of $1,000 Goal

Fundraiser Title

Denny Banks

Amount Raised

$1,000

 

100% Raised of $1,000 Goal

Donor Comments

Kay O'Keefe

Kay O'Keefe

In memory of Robby Backenson and Richard O'Keefe 2 years ago

Bill and Kate Groel

Bill and Kate Groel

Good Luck and Thank You! 2 years ago

Kim & Liana

Kim & Liana

2 years ago

Margie & Ed McFadden

Margie & Ed McFadden

Best of luck, Kelly! We'll be 'stalking', I mean following you on race day and sending lots of positive energy your way! 2 years ago

Heather Fraunberger

Heather Fraunberger

woohoo!! Go Kelly!!! Yaaaaay! 2 years ago

Alanna

Alanna

Good luck!!!! 2 years ago

Karen

Karen

2 years ago

The Schwartz Family

The Schwartz Family

Good Luck Kelly! I'll be cheering you on from NJ. Totally impressed by you!!! 2 years ago

Lori Wells

Lori Wells

So in awe of you for both doing the ironman and for raising awareness and money for ALD. Working in genetics and personally having a child with special needs I realize that individual efforts like yours are so important . You are awesome! 2 years ago