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Brooke Medosch's Fundraiser:

14K Climb Gray's Peak to Benefit CureBatten.org

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BENEFITING: Giving Back Fund

Brooke Medosch

THE STORY:

Please support us on our 3rd Annual Gray's Peak Hike!  This year our big climb will be on August 19th.  

The Charlotte and Gwenyth Gray Foundation was created to fund the urgent medical research necessary to save the lives of Charlotte and Gwenyth Gray and many of other children devastated by this disease. Batten Disease is an incredibly rare and fatal neurodegenerative brain disorder; because this disease is so rare, it is considered an orphan disease and has received very little funding. It is up to US (the Gray and Fugere families, their network of friends, and those who are touched by their stories) to raise the amount of money needed to treat and rehabilitate the children who suffer from this previously fatal and cruel disease. The Colorado, California and Minneapolis friends and families of the Grays and Fugeres are hiking/climbing Grays Peak on August 19th in support of Charlotte and Gwenyth Gray Foundation for CureBatten.org. Please sponsor us as we embark on the Gray's Peak 14K climb, or sign up as a Team Member and join us! Kristen Gray (Charlotte and Gwen's mother) and Beth Fugere (Blake and Brett's mother) will be joining us this year and would love your support. Every dollar counts and every moment matters. Additional Information can be found at: CureBatten.org 


Charlotte and Gwenyth Gray's Story: was born just a few weeks before Christmas 2010 and developed at the pace of a typical baby and toddler – walking and talking, with an early passion for gymnastics, dancing and swimming. After Charlotte’s first full year of preschool, her parents, Kristen and Gordon, noticed that she seemed to hit a plateau developmentally. In March 2015, after months of unanswered questions and tests, Charlotte was diagnosed with Batten disease (Late Infantile NCL Batten Disease CLN6). A geneticist explained that this rare neurodegenerative disorder had no treatment options or cure and would leave Charlotte blind, immobile and cognitively impaired, and ultimately, gone between the ages of 6 and 12. The Grays immediately had their younger daughter Gwenyth evaluated and tests revealed the same devastating diagnosis. Due to its rarity, solutions for this fatal disease had received minimal research, focus and funding. Kristen and Gordon’s worlds were shattered, but they were unwilling to accept “there is no cure” for an answer and created the foundation to ensure that they would be the last parents to hear that there are no options when children in the future are diagnosed with Batten disease CLN6. 


Blake & Brett Fugere's Story: After several months of misdiagnosis and unanswered questions our sweet Blake (5) was diagnosed with CLN6 in early November 2016. Blake is the 11th person in the world with the CLN6 variant. Immediately we had his then 9 month-old baby brother Brett (now 1) tested and received the devastating news that he too has Batten CLN6. Brett is now the 12th person in the world with this variant. Blake was recently treated with the life-saving gene therapy treatment funded by the foundation. He continues to regain lost skills daily and recently returned to pre-school showing amazing promise. We await next steps to Brett’s treatment to prevent the devastating impacts of the disease from beginning. The Gray Foundation is steadfast in their focus to not only cure Batten CLN6 but other neuro-degenerative conditions and we are right there with them! 


The Potential Cure: The gene therapy program initiated, coordinated, and funded by the foundation has resulted in an FDA-approved first of its kind investigational gene therapy clinical trial for children with Batten CLN6. Three patients have already been enrolled for participation and recruitment for additional patients is ongoing. While the road ahead post-therapy will be long, Charlotte and the other children treated are providing reason to be optimistic, gaining back new words and motor skills almost daily. Led by our team of medical advisors, we continue to actively fund leading research teams exploring promising innovations in gene therapy, small molecule therapies, stem cell therapy, RNA modulating compounds, repurposed pharmaceuticals, and natural compounds. Over $3.2 million has been committed directly to medical research in less than a year. It is our expectation that the advances achieved related to the treatment of this particular variant of Batten disease will be applicable to medical advances necessary to combat additional rare diseases impacting hundreds of millions of people. Help us Fund the Cure!

DONATE

To This Fundraiser

$16,010

MONEY RAISED
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  • Masonic Lodge-NJ

    $500

  • krista demrdache

    $50

  • Amanda Clark

    $25

  • Thomas Dassatti

    $50

  • Anonymous

    $500

  • Patrick Brockamp

    $50

  • Doug Johnson

    $100

  • Jeff Lindquist

    $75

  • EmC

    $25

  • Tim and Jodie Farrow

    $50

  • The Bockraths

    $50

  • Sasha Jane

    $50

  • Mack family

    $100

  • Gary anf Peggy Falkenstein

    $250

  • Gary and PeggyFalkenstein

    $250

  • Dave and Judy Ritchey

    $50

  • Brett Fugere

    $100

  • Friends of Blake

    $175

  • Tom Michaels

    $100

  • Anonymous

     

  • Renee Cowan

    $25

  • Sophia & Ben Studnicka

    $100

  • Erin Chidsey

     

  • Carney Family

    $25

  • Jasmine & Todd

     

  • Blake Fugere

    $1,000

  • Mac and Tara Nelson

    $100

  • Ian & Kelly Webb

    $50

  • B. Phillips

    $100

  • Janie Grueneberger

    $100

  • Kay and Larry Edwards

    $100

  • JE

    $50

  • graham family

    $100

  • V Fugere

    $100

  • Judy Beeck

    $250

  • Andrea and Jason Marquette

     

  • Ferioli's

    $150

  • Karen Schwartz

    $25

  • Mike and Lori Deegan

     

  • The Schmela's

    $25

  • Allison Weber

    $50

  • Jen and Makena Schreiner

    $25

  • Papi

    $50

  • Aimee Meester

    $100

  • Ty Correy

    $100

  • Julie Huddock

    $50

  • Cathy Preble

    $75

  • Jeff Hall

    $50

  • Michael Berg

     

  • Penny Feit

    $50

  • Corey Martin

    $50

  • Naze Family Jesse, Debra, York, Reese, & Tanner

    $150

  • Tim Schwartz

    $50

  • Todd Stauffer

     

  • Dale and Denise Thompson

    $500

  • Nana, Pop Pop & Uncle Chet

    $1,000

  • Rebecca Prinsen

    $100

  • Debbie Meeks

    $50

  • The Larkins

    $100

  • Devon Pothier

    $100

  • J. Bosko

    $100

  • The Klabons

    $50

  • SPOT

    $25

  • Leslie cox

    $100

  • Steven Haase

    $100

  • Tim Schindler

    $25

  • Linda Erickson

     

  • The Rudolph's

    $50

  • ryan meissner

    $50

  • Mo and Cece

     

  • Erick Rudolph

    $50

  • April Djurasaj

    $25

  • Katie Earl

    $25

  • Tracey and Jay Fanelli

    $500

  • Karisa Douglas

    $50

  • Lisa Mick

    $50

  • Nancy & Dickie Wamsley

    $100

  • Leslie Cervantes

    $50

  • Ramos Family

    $50

  • Sandy & John Michaels

    $50

  • Anna Pepgjonaj

    $100

  • Meg, Ryan & Millie

    $50

  • Bill and Jean Sosna

    $100

  • Brent, Alice and Jake Henry

    $50

  • Serranos, Klusmanns, Cardones, Kim Reeve

    $575

  • Mark Kluge

    $25

  • Anonymous

     

  • The Kallemeyn Family

    $50

  • Nikki & Matt

     

  • Dennis and Sharon Ioka

    $50

  • Amy Morrissey

    $20

  • Julia Bell

    $50

  • Anonymous

    $100

  • Meghan Caiazzo

    $100

  • Maureen Capista

    $100

  • Roberta McIntire

    $50

  • Ron and Wendy Torney

    $100

  • Katie Christensen

    $25

  • Hema and Family

    $50

  • Ford & Madeleine Medosch

    $150

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53% Raised of $30,000 Goal

Fundraise for this Campaign

The Team: $16,010 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Beth Fugere

Amount Raised

$6,450

 

45% Raised of $14,278 Goal

Fundraiser Title

Brooke Medosch

Amount Raised

$3,175

 

11% Raised of $30,000 Goal

Fundraiser Title

Christi Ioka

Amount Raised

$2,205

Fundraiser Title

Kathy Michaels

Amount Raised

$1,125

Fundraiser Title

Jennifer Guerriero

Amount Raised

$1,075

Fundraiser Title

Suzanne McKee

Amount Raised

$945

 

38% Raised of $2,500 Goal

Fundraiser Title

Stephanie Gaydos

Amount Raised

$375

Fundraiser Title

Kristen Gray

Amount Raised

$350

Donor Comments

Ford & Madeleine Medosch

Ford & Madeleine Medosch

DONATION: $150

Two sweet kids selling lemonade, cookies and golf balls on a Saturday morning! 3 weeks ago

Hema and Family

Hema and Family

DONATION: $50

4 weeks ago

Katie Christensen

Katie Christensen

DONATION: $25

4 weeks ago

Ron and Wendy Torney

Ron and Wendy Torney

DONATION: $100

1 month ago

Roberta McIntire

Roberta McIntire

DONATION: $50

1 month ago

Maureen Capista

Maureen Capista

DONATION: $100

For Brooke's commitment and inspiration �� 1 month ago

Meghan Caiazzo

Meghan Caiazzo

DONATION: $100

1 month ago

Anonymous

ANONYMOUS

DONATION: $100

1 month ago

Julia Bell

Julia Bell

DONATION: $50

1 month ago

Amy Morrissey

Amy Morrissey

DONATION: $20

1 month ago