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For Lily’s 8th Birthday

A campaign by: Ann Fromm & Bill Payne / $75,000 Goal
142 Donors
Raised Percent :
77.06%

77.06% Funded
, United States (US)
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According to Lily’s mom, Malin Delling:

Lily’s 8th birthday is just coming up and in some ways she is the most typical 8-year old girl you will meet. She loves school and her teacher, and reads and does math at her grade level. Her favorite things to do are surfing, swimming, horseback riding, dancing and listening to music; more than anything, she loves hanging out with her friends.  But unlike your average 8-year old, Lily can’t do any of those things without full support.  Rett Syndrome has taken away her speech and her hand use, and she can only walk with assistance. Sometimes she gets frozen, unable to breathe, and she has days when dystonia causes her body to shake uncontrollably or get stuck in involuntary movement. Lily basically spends every minute of every day fighting a body that doesn’t cooperate anymore.

We take her to numerous therapies every week, just to keep the status quo. But Rett Syndrome is a progressive disorder, so until there is a cure, nothing is ever going to get easier for Lily. It’s just going to get increasingly harder and her body will get more and more affected by constant neurological battles.  Imagine, when you look at your kids or grandkids, and think how bittersweet it is that they will not be this small and cute forever, that, as Rett parents, we look at our kids and know that, barring a cure, this is the most functional they will ever be.

But thanks to all of you that support RSRT, there is now actual hope for a cure!  The first gene therapy trial is currently recruiting and the research that got us to this point was heavily funded by RSRT. We are so thankful for your support and hopefully we’ll be able to share even better news by Lily’s next birthday.

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Deepest thanks from Ann Fromm, my dedicated husband Bill Payne, and Lily’s super-wonderful parents, my son, Devin Fromm and his wife, Malin Delling.

 

 

 

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Name Donation Amount Date
Edward Ging $1,000.00 June 26, 2023
David Reichbaum $25.00 March 30, 2023
Mary Murray $100.00 February 14, 2023
Kathleen & Erin Meade $100.00 February 07, 2023
Nhu Chung $137.33 February 02, 2023
Eileen & Paul Curry $600.00 January 30, 2023
Louis & Sandra Kushner $100.00 January 30, 2023
The Ging Foundation $5,000.00 January 30, 2023
Katarina Lugner $15.00 January 25, 2023
Thea Petchler $100.00 January 25, 2023
Barbara & Albert Horton $500.00 January 20, 2023
Elizabeth Weaver $150.00 January 20, 2023
Elaine Dullea $30.00 January 17, 2023
James Poth $500.00 January 16, 2023
Rose Mary OMalley $100.00 January 16, 2023
Marilyn & Howard Bruschi $350.00 January 09, 2023
David & Debra Longhini $150.00 January 05, 2023
Linton & Carol Moyer $545.00 January 05, 2023
Anthjony & Joy Conti $100.00 January 03, 2023
John Meck $100.00 January 03, 2023
William Bresnahan $100.00 January 03, 2023
Linda Thier $250.00 January 03, 2023
Andrew DeYoung $50.00 January 03, 2023
Geno Mell $100.00 January 03, 2023
Marian McKenna $2,000.00 December 31, 2022
Mary Anne Sharer $500.00 December 30, 2022
karen and joe Kelley $200.00 December 29, 2022
Jay & Margo Troutman $100.00 December 29, 2022
Judith Walter $150.00 December 29, 2022
Mary Louise Vaughn $100.00 December 29, 2022
Martha Beard $5,000.00 December 29, 2022
Jeanne Berdik $50.00 December 29, 2022
constance Bentzen $100.00 December 28, 2022
Janet Wagner $100.00 December 27, 2022
Paul DePasquale $100.00 December 27, 2022
Ronald Dean $100.00 December 27, 2022
Ryan Mckenna $250.00 December 27, 2022
Anne Thomas $100.00 December 27, 2022
Annie & Joe Schlafly $250.00 December 23, 2022
John Schlafly $100.00 December 22, 2022
Chris Parker $500.00 December 22, 2022
Charles Snyder $250.00 December 22, 2022
Kathleen Gavigan $1,000.00 December 20, 2022
Jeffrey Markel and Carol Robinson $250.00 December 20, 2022
Dolly Gee $100.00 December 20, 2022
Peter & Gracia Sheptak $100.00 December 20, 2022
Ellen Doyle & Lawrence Frolik $300.00 December 20, 2022
Doug & Leslie Kittenbrink $250.00 December 20, 2022
Kathleen Cecil $75.00 December 20, 2022
Tim and Ann Slavish $100.00 December 19, 2022
Adrian & Fran Chesler $100.00 December 19, 2022
Chris Gillotti $100.00 December 18, 2022
BARMAK BEHDADNIA $200.00 December 17, 2022
KARL Fromm $100.00 December 16, 2022
Helen & Stephen Casey $1,000.00 December 15, 2022
David & Lynnae Evans $500.00 December 14, 2022
Lois & Geoff Foley $100.00 December 14, 2022
Mary & Harry Wagner $200.00 December 14, 2022
Stefano and Maria Bartoletti $300.00 December 14, 2022
Raymond Smith $200.00 December 14, 2022
Margaret Runnette $50.00 December 14, 2022
Merrie & Stuart Libicki $50.00 December 12, 2022
Joan & John Ammer $100.00 December 12, 2022
Edwin Strassburger $100.00 December 12, 2022
Bruce & Virginia Fickman $100.00 December 12, 2022
David Goldman & Judith Esman $500.00 December 12, 2022
Denise & John McCarthy $100.00 December 12, 2022
Kris Davitt $500.00 December 12, 2022
Madelyn Curtin $35.00 December 12, 2022
Herb Howe $200.00 December 08, 2022
GEORGE SCHREIBEIS $125.00 December 08, 2022
Aileen La Tourette $100.00 December 08, 2022
Richard Rosenblatt $200.00 December 07, 2022
Naomi Herman $50.00 December 07, 2022
James Fanning $200.00 December 07, 2022
Jeanie Schlafly $375.00 December 07, 2022
Barbara Milton $100.00 December 07, 2022
Kearney & Jane McNeil $100.00 December 07, 2022
Joan Ewing $150.00 December 07, 2022
Calvin & Patricia Harvey $100.00 December 07, 2022
Gwen Robosson $100.00 December 07, 2022
The Herald Family $250.00 December 07, 2022
Mary Ann Templeton $50.00 December 06, 2022
Dick and Christie Findlan $200.00 December 06, 2022
Michele and John Bender $150.00 December 06, 2022
Anonymous $100.00 December 06, 2022
Joseph Stuligross $250.00 December 06, 2022
Anonymous $100.00 December 06, 2022
Berenice Wilkinson $100.00 December 05, 2022
Liza Brown $50.00 December 05, 2022
Victoria Fromm $100.00 December 05, 2022
Dana Dupre and Justin Ehrenwerth $1,000.00 December 05, 2022
Susan Gilmore $100.00 December 05, 2022
bernard McGinley $50.00 December 05, 2022
ELIZABETH Wainwright $200.00 December 05, 2022
John Myers $150.00 December 05, 2022
Pamela Meadowcroft $100.00 December 05, 2022
Jane & Mike Waller $100.00 December 05, 2022
Jordan & Erika Strassburger $350.00 December 05, 2022
Sarah & James Cauley $300.00 December 05, 2022
Bernard & Anne McKenna $50.00 December 05, 2022
Arleen & Donald Wagner $500.00 December 05, 2022
Roslyn & Herschel Segall $150.00 December 05, 2022
Paul & Penny McKenna $200.00 December 05, 2022
Hugh & Carole Curtin $500.00 December 05, 2022
David & Colleen O'Brien $150.00 December 05, 2022
Julia & Larry Ondako $300.00 December 05, 2022
David & Michaileen Vilsack $150.00 December 05, 2022
Charlene & Gus Marquart $100.00 December 05, 2022
Albert & Katherine Lewis $100.00 December 05, 2022
Edward Ifft $100.00 December 05, 2022
Alex & Leslie Sciulli $25.00 December 05, 2022
Elliott & Dee Oshry $100.00 December 05, 2022
Daniel Kamin $200.00 December 05, 2022
Jane & Howard Voigt $100.00 December 05, 2022
Rosemary & Bill Getsie $50.00 December 05, 2022
Francis & Gilda Hurite $50.00 December 05, 2022
Carol Heppner $50.00 December 05, 2022
Nancy & Thomas Kelly $100.00 December 05, 2022
Shirley & Stefan Fromm $500.00 December 05, 2022
Karl & Marcia Kline $200.00 December 05, 2022
Audrey McKenna $200.00 December 05, 2022
Adria Kelleher & Gerald Krakoff $100.00 December 05, 2022
Lindsey E Herman $50.00 December 02, 2022
Edward & Patsy McKenna $500.00 December 02, 2022
Janet & John Conomos $200.00 December 01, 2022
Matthew Rudzki $50.00 November 30, 2022
James Brown $100.00 November 29, 2022
Marie Hinchlidfe $100.00 November 29, 2022
Lynn Detrick $100.00 November 29, 2022
DONNA ROSENWASSER $100.00 November 29, 2022
Barbara Maher $250.00 November 29, 2022
Kathleen Laboon $50.00 November 28, 2022
Louis Certo $50.00 November 28, 2022
Malin & Devin Delling Fromm $100.00 November 26, 2022
Ann Fromm & Bill Payne $20,000.00 November 24, 2022
Anonymous $10.00 November 23, 2022