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Jenn Seney's Fundraiser:

Team Rett Boston Marathon 2014

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Jenn's Photo
Jenn's Photo
Jenn's Photo
Jenn's Photo
Jenn Seney

THE STORY:

Dear Folks,

Since Abby was diagnosed with Rett Syndrome less than two years ago, you have donated more than $38,000 to either of the International Rett Syndrome Foundation, the Boston Children's Rett Clinic or the Rett Syndrome Association of Massachusetts.  For that, Jennifer and I are eternally grateful.  

There has been tremendous progress made since the genetic cause of Rett Syndrome was identified in 1999, with much of that made in the past few years, which you all have literally helped make happen!  To wit:

Children's Hospital Boston - Dr. Walter Kaufmann (Abby's doctor) is launching Phase II of the IGF-1 Clinical Trial.  Pilot results of Phase I revealed an improvement in general behavior, mood, hand function, and in general improved quality of life, the latter of which is a power review criteria for the FDA.  

Baylor College of Medicine - The drug NNZ-2566 has been tested for safety and Phase II will begin shortly, testing for improved/restored neurological function in our girls.  

Whitehead Institute at MIT - This study led by Yun Li, PhD has redefined the function of the MECP2 Gene, which bears a mutation in Rett Girls, and is pushing research forward on that front.  

Incidentally, the Rett Syndrome Association of Mass. was the primary fundraiser for Dr. Li's study, using funds raised from Boston Marathon 2013 fundraising.  About 15-20 of us Rett parents, and our girls, met Dr. Li at a gathering a few days before the marathon.  She'd never met a girl with Rett ... it was all just a lab experiment for her until then.  It was a very touching experience.  

We're back to ask for any donation you are willing to make in support of Rett Syndrome research benefitting Abby and those girls like her.  Your money, I assure you, is being put to good use.  

All donations are tax deductible and can be executed electronically on this website. However, Crowdrise does collect a small administrative fee.  To avoid that, you may send a check to me, at the address below, made out to the Rett Syndrome Association of Massachusetts.  

Matt Seney

45 Cider Mill Road

Sudbury, MA 01776

In closing, please take a moment to read the words of Dr. Andreas Rett, who is credited with identifying Rett Syndrome in 1954.

"These three words summarize best our task: To live, to love, and to learn. We are aware of the fact that many mysteries of this syndrome still remain undisclosed, and therefore, for the time being, we have no option but to live with it. However, the children with their very special ways give us enough impulse to share their lives. It is a further mystery of this syndrome that the affected children render it easy for us to love them. A dominating factor in the care of such children is that they understand us and we understand them. Their appearance and the sparkle in their eyes make it easy to love them. Daily care for them and working with them gives us grownups strength, enabling us to learn the special treatment required, thus furthering our own development. To live with them, to love them and to learn from them are the rudimentary principles of our work." 

 

Sincerely,


Matt & Jenn Seney

$12,587

MONEY RAISED
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  • Matt & Jenn Seney

    $1,000

  • Molly Clark

    $75

  • Patrick & Christina Dodge

    $100

  • Anonymous

    $50

  • Keely and Andrew Plunkett

    $100

  • Rob & Christel Maloney

     

  • Cheri & Connor Armstrong

    $250

  • Frank & Susan Carrazza

    $200

  • Sarah Guernsey

    $100

  • David & Jeanne Glynn

    $25

  • Chuck & Joanne Marginot

    $500

  • Maureen Bonzey

    $50

  • Jim & Sharon Sinerate

    $100

  • Luke Griffin

    $200

  • Andrea Bartick

    $50

  • Bob & Eileen Plunkett

    $100

  • Ben & Frannie Moyer

    $500

  • Steve & Karen Bogue

    $200

  • Bill & Diann Casey

    $100

  • Valle Family

    $100

  • Sara Allegretti

    $50

  • Nicole & Adam Jacobs

    $100

  • Reedy Family

    $50

  • Tim Casaletto

    $50

  • Anonymous

     

  • Jack and Leslie Gillis

    $100

  • Keane Family

    $262

  • Judy and Mac

    $50

  • Robitaille Family

    $100

  • Richard & Margaret Ciccarelli

    $50

  • Kevin & Elizabeth Grimes

    $1,000

  • Mike & Emily Grimes

    $50

  • Paul Pender

    $1,000

  • Judy & Fred McCormick

    $50

  • Paul & Suzanne Frazer

    $100

  • Tom & Dottie Pender

    $500

  • Sue and Ryan Mason

    $35

  • Brian and Brittany Hardiman

    $100

  • Ryan & Kari Canney

    $50

  • Russ

     

  • Anonymous

    $25

  • K. Belliveau

     

  • Jae Song

    $50

  • Mike and Kerry Ahern

    $100

  • Amy and Channing Ferrer

    $100

  • The Holmes Family

    $25

  • Ashley Ransow

    $40

  • Melissa, Matt, Emma & Owen

    $50

  • Donald Kondub

    $150

  • Katie Holmes

    $25

  • Meg and Mike Gargano

    $50

  • Grenon Family

    $250

  • Laurie Holmes

    $50

  • Jane and bob Maloney

    $100

  • Karen McCarthy

    $100

  • Tim & Carolyn Grimes

    $500

  • Ed & Kathy

    $200

  • Anonymous

    $100

  • The Barnowski Family

    $100

  • The Brickley Family

    $100

  • Beth Herrmann

    $50

  • Ted & Carol Seney

    $500

  • Susan Leary

    $100

  • Tom & Emily Wood

    $250

  • Joe & Linda Gloski

    $50

  • Seamus, Siobhan & Liam

    $100

  • Mary Quigley

    $125

  • Sally Funk

    $50

  • Tom and Judy Grimes

    $100

  • Pat Ryan

    $50

  • Rick, Kris, Bree & Tristan

    $200

  • Peg and Paul Venditti

    $150

  • The Cashes

    $300

  • The LaFort Family

    $200

  • Jeff Pacheco

    $100

  • Kate & Steve Wolseley

    $50

  • Eric and Tracy Bertonazzi

    $100

  • Parks family

    $100

  • Aristizabal Family

    $100

  • Brian & Stephanie Germani

    $50

  • Peter & Jenni McCarthy

    $100

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84% Raised of $15,000 Goal

Fundraise for this Campaign

The Boston Marathon on Crowdrise John Hancock on Facebook John Hancock on Twitter

The Team: $185,579 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Anthony Rochte

Amount Raised

$20,215

Fundraiser Title

Daniel Warner

Amount Raised

$18,209

 

121% Raised of $15,000 Goal

Fundraiser Title

Dominic Giegerich

Amount Raised

$14,363

 

103% Raised of $14,000 Goal

Fundraiser Title

Ryan & Erica Robertson

Amount Raised

$13,120

 

131% Raised of $10,000 Goal

Fundraiser Title

Jenn Seney

Amount Raised

$12,587

 

84% Raised of $15,000 Goal

Fundraiser Title

Dickie Nee

Amount Raised

$11,865

 

237% Raised of $5,000 Goal

Fundraiser Title

Zenaida Jimenez

Amount Raised

$9,283

Fundraiser Title

Krissy Nowell

Amount Raised

$8,889

Donor Comments

Peter & Jenni McCarthy

Peter & Jenni McCarthy

DONATION: $100

We love you, Abby! 3 years ago

Brian & Stephanie Germani

Brian & Stephanie Germani

DONATION: $50

3 years ago

Aristizabal Family

Aristizabal Family

DONATION: $100

3 years ago

Parks family

Parks family

DONATION: $100

3 years ago

Eric and Tracy Bertonazzi

Eric and Tracy Bertonazzi

DONATION: $100

3 years ago

Kate & Steve Wolseley

Kate & Steve Wolseley

DONATION: $50

Thank you Matt and good luck! We love you :-) 3 years ago

Jeff Pacheco

Jeff Pacheco

DONATION: $100

Good Luck today Matt! 3 years ago

The LaFort Family

The LaFort Family

DONATION: $200

Thank you for running for all the Angels ! 3 years ago

The Cashes

The Cashes

DONATION: $300

Good luck Matt!! 3 years ago

Peg and Paul Venditti

Peg and Paul Venditti

DONATION: $150

Good luck Matt! 3 years ago