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Kate Riley's Fundraiser:

Rett Syndrome Association of Massachusetts Boston 2017

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Kate Riley

THE STORY:

On April 17th, I will be running the Boston Marathon in partnership with the Rett Syndrome Association of Massachusetts (RSAM). I am running in honor of all of the girls and women with Rett Syndrome that I have met since I began working with the Rett Research Program at Boston Children's Hospital this June. 

Rett Syndrome is a neurological disorder caused by a mutation of the MECP2 gene on the X-chromosome and affects 1 in every 10,000 females. Although rare, males also can be diagnosed with Rett Syndrome. Children with Rett seem to develop normally until they reach 6 to 18 months of age, but then they undergo a period of regression and lose many cognitive and motor skills they had previously gained. Almost all children lose their hand function and their ability to talk. Rett Syndrome can also hinder normal respiratory, digestive, and mood function, limit the ability to walk, and cause seizures. Currently, there is no cure. 

I first learned about Rett Syndrome when I interviewed for a position in the Rett Research Program at Boston Children's Hospital this past spring. Currently, I work with the research team as a study coordinator, helping to run both observational studies to better understand Rett Syndrome and clinical trials in search of treatments. To be honest, I felt nervous when I first ran study visits because I wasn’t sure how to interact with a little girl who couldn't talk back or even make eye contact. However, I quickly learned that these girls have so many unique ways to communicate and express their spunky or sweet personalities. Furthermore, I was struck by the love, selflessness, and hope demonstrated by their parents and families. So many of the families drive, or even fly, many miles to participate in clinical trials in hopes that a drug could take us all one step closer to finding a cure for Rett Syndrome. 

While I am running for all of the amazing girls and women that I have met through my time at BCH, my marathon is dedicated to a very special little girl named Ava. Ava lives with her parents and big sister in Carlisle Massachusetts. She is a beautiful spunky Kindergartner and thrives within her community. Ava uses an eye-gaze speech-generating device to communicate with her teachers, peers and family and although Ava is able to walk, she does need close contact and constant care. That doesn’t stop her from being a typical 6-year-old! Ava loves to play dolls with her sister by directing her sister’s play. She also loves the outdoors:  riding her adaptive bike, running on the playground or chasing bubbles. Ava’s absolute favorite thing to do, however, is watch sports with Dada. She is a miniature Gronk fan! She laughs and cheers her Pats, college basketball, the Olympics, you name it. Ava is determined. She “wants to do what the others are doing” and inserts herself in everything. ‘FOMO’ (fear of missing out) was coined for her. 

Ava’s determination to do everything her peers are doing is paralleled by the determination of doctors, researchers, teachers, and families all working towards helping girls living with Rett Syndrome. The donations raised by the RSAM marathon team will fund future biomedical research that will hopefully one day find a cure or better treatment opportunities for this disorder. Personally, I am committed to raising $8,500 by race day to support this research. Please consider helping me to reach this goal by making a donation here. If you prefer, checks can be made payable to the Rett Syndrome Association of Massachusetts (RSAM) and mailed to me at:  677 Washington St Apt. 2 Brookline, MA 02446.

Please remember that some companies offer donation matching and all donations are tax deductible. Any donation size is truly appreciated! Thank you so much for your support!

 

RETT SYNDROME ASSN OF MASSACHUSETTS wrote -

Team Rett FundRacers will be raising money for research in hopes that Rett syndrome can be reversed!

Seen almost exclusively in girls, Rett syndrome is a unique developmental disorder caused by mutations on the X chromosome on a gene called MECP2. A rare disease, the incidence of Rett syndrome is about 1 in 10,000 females. The course of Rett syndrome, including the age of onset and severity varies from child to child. As the syndrome progresses, most children lose purposeful use of their hands and the ability to speak. Other symptoms may include loss of motor skills, breathing and cardiac irregularities, seizures, digestive problems, scoliosis, and tremors.

Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome!  For more information about RSAM, please visit our website at www.rettsyndromemass.org

DONATE

To This Fundraiser

$9,761

MONEY RAISED
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  • David and Tracey Schmidt

    $100

  • Jackie Huynh

    $10

  • Diane

     

  • Rachel Arens

    $10

  • Cassie Regan

    $100

  • Andrea Tilden

    $100

  • Pedro

    $25

  • Rick and Joan Waniger

     

  • The Gryniewiczs

    $200

  • The Miarecki Family

     

  • Jack and Jenny Henkemeyer

    $95.70

  • Nana Jill

    $260

  • The Rumballs

    $250

  • Kristin Hirschboeck

    $50

  • The Clays

    $500

  • Richard and Pamela Strausd

    $150

  • Ryan Hansen

    $25

  • Sylvia Xu

    $100

  • Judy Klevan

    $100

  • Kim & Chris Miller

    $100

  • Carylanne W

     

  • Kim SCHNEIDER

    $100

  • Pamela and Richard Strauss

    $25

  • Anonymous

     

  • Ron Peck

     

  • Michael Haupert

    $25

  • Anonymous

    $25

  • Jason & Laura Hutzler

    $50

  • Paul Lopes

    $50

  • The Valentini-Lillys

    $50

  • The Horths

    $70

  • Nancy Gerrand

    $50

  • Jack Burton

    $20

  • Woody and Shari Godbold

    $200

  • Robin Doroff

    $25

  • Nicholas Olson

    $20

  • Debbie and Mark Hansen

    $100

  • Dana Benden

    $250

  • The Pham Family

     

  • Pipkorn Family

    $50

  • Anonymous

    $25

  • Anonymous

    $25

  • Cam C

    $10

  • The Fox Family

    $50

  • Patty Gallagher-Kosmatka

    $25

  • Sandra Poellinger

    $25

  • Erin S.

    $25

  • Michael and Laurie Dolan

    $25

  • Anonymous

     

  • Walter Kuhn

    $100

  • Misha Strage

    $25

  • Schlesinger Family

     

  • Peter Diplock

     

  • Deb Schams

     

  • Scheidt Family

     

  • Mr. Wilhelmy

     

  • Angela and Rob Smith

    $25

  • Laura Do

    $25

  • anne haffenreffer

    $250

  • Emma Clay

    $100

  • Susan Fleurant

    $10

  • Jack Clay

    $20

  • Katie Griffin

    $26.20

  • Bryan and Elizabeth Godbold

    $100

  • The Doyle Family

    $100

  • Cat McClure

    $20

  • Prudential Gift Matching

    $180

  • Judy Marohn

    $100

  • Meghan Dean

    $25

  • Andrea Smith

    $50

  • Dean Family

    $50

  • Lauren Baczewski

    $25

  • Meg Giblin

    $25

  • Lindsay & Brandon

    $50

  • Anonymous

    $50

  • David Strage

    $100

  • Grace Bazin

    $50

  • David K. Urion, M.D., FAAN

    $500

  • Sylvia & Clint

    $100

  • Kira Dies

    $25

  • Rachel Gerhardt

    $25

  • Pam Myirski

     

  • Joe Ackil

    $50

  • Nana Jill

    $250

  • Robin

    $25

  • Oliver Shawn

    $20

  • Mom, Dad, Luke, Grace and Peter

     

  • Yoga Fundraiser

     

  • Marisela Dy

    $100

  • Katherine Keever

     

  • Steve Riley and family

    $100

  • Lara Pierce

    $25

  • Heather Olson and Jeffery Small

    $50

  • Sarina

    $10

  • Katie and Ryan Toohil

    $100

  • Tanya Scott

    $25

  • Anonymous

    $10

  • Lorraine Ward

     

  • PeriAnne Huggins Olson

    $20

  • The McCartney Family

     

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115% Raised of $8,500 Goal

Fundraise for this Campaign

The Team: $87,762 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Tracy Freeman

Amount Raised

$14,371

 

144% Raised of $10,000 Goal

Fundraiser Title

Jenn Seney

Amount Raised

$12,577

 

63% Raised of $20,000 Goal

Fundraiser Title

Andrés Cosano Molleja

Amount Raised

$10,637

 

106% Raised of $10,000 Goal

Fundraiser Title

Mark Lazzara

Amount Raised

$10,374

 

104% Raised of $10,000 Goal

Fundraiser Title

Kate Riley

Amount Raised

$9,761

 

115% Raised of $8,500 Goal

Fundraiser Title

Beth Herrmann

Amount Raised

$8,540

 

100% Raised of $8,500 Goal

Fundraiser Title

Andrew Caligiuri

Amount Raised

$8,520

 

100% Raised of $8,500 Goal

Fundraiser Title

Krissy Nowell

Amount Raised

$8,274

 

83% Raised of $10,000 Goal

Donor Comments

The McCartney Family

The McCartney Family

4 months ago

PeriAnne Huggins Olson

PeriAnne Huggins Olson

DONATION: $20

You are amazing Kate! Boston #29239 4 months ago

Lorraine Ward

Lorraine Ward

4 months ago

Anonymous

ANONYMOUS

DONATION: $10

4 months ago

Tanya Scott

Tanya Scott

DONATION: $25

Awesome that you are doing this for Miss Ava and all of the others with Rett! 4 months ago

Katie and Ryan Toohil

Katie and Ryan Toohil

DONATION: $100

4 months ago

Sarina

Sarina

DONATION: $10

Such an inspiring story to read - good luck!! :) 4 months ago

Heather Olson and Jeffery Small

Heather Olson and Jeffery Small

DONATION: $50

4 months ago

Lara Pierce

Lara Pierce

DONATION: $25

4 months ago

Steve Riley and family

Steve Riley and family

DONATION: $100

4 months ago