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.
| Name | Donation Amount | Date |
|---|---|---|
| Yaimi Azua Vega | $100 | October 17, 2024 |
| Steven Goodman | $250 | March 12, 2024 |
| Jay & Colleen McKenna | $500 | March 12, 2024 |
| Shell Oil Match for Dupre | $2,000 | February 29, 2024 |
| Steven Goodman | $250 | February 27, 2024 |
| Jay & Colleen McKenna | $500 | February 27, 2024 |
| Frank & Colleen McKenna | $500 | February 12, 2024 |
| Marilyn & Howard Bruschi | $100 | December 28, 2023 |
| JAY SMITH | $100 | December 27, 2023 |
| Louise McKenna | $250 | December 27, 2023 |
| Audrey McKenna | $200 | December 11, 2023 |
| Edward Ging | $1,000 | June 26, 2023 |
| David Reichbaum | $25 | March 30, 2023 |
| Mary Murray | $100 | February 14, 2023 |
| Kathleen & Erin Meade | $100 | February 07, 2023 |
| Nhu Chung | $137 | February 02, 2023 |
| Eileen & Paul Curry | $600 | January 30, 2023 |
| Louis & Sandra Kushner | $100 | January 30, 2023 |
| The Ging Foundation | $5,000 | January 30, 2023 |
| Katarina Lugner | $15 | January 25, 2023 |
| Thea Petchler | $100 | January 25, 2023 |
| Barbara & Albert Horton | $500 | January 20, 2023 |
| Elizabeth Weaver | $150 | January 20, 2023 |
| Elaine Dullea | $30 | January 17, 2023 |
| James Poth | $500 | January 16, 2023 |
| Rose Mary OMalley | $100 | January 16, 2023 |
| Marilyn & Howard Bruschi | $350 | January 09, 2023 |
| David & Debra Longhini | $150 | January 05, 2023 |
| Linton & Carol Moyer | $545 | January 05, 2023 |
| Anthjony & Joy Conti | $100 | January 03, 2023 |
| John Meck | $100 | January 03, 2023 |
| William Bresnahan | $100 | January 03, 2023 |
| Linda Thier | $250 | January 03, 2023 |
| Andrew DeYoung | $50 | January 03, 2023 |
| Geno Mell | $100 | January 03, 2023 |
| Marian McKenna | $2,000 | December 31, 2022 |
| Mary Anne Sharer | $500 | December 30, 2022 |
| karen and joe Kelley | $200 | December 29, 2022 |
| Jay & Margo Troutman | $100 | December 29, 2022 |
| Judith Walter | $150 | December 29, 2022 |
| Mary Louise Vaughn | $100 | December 29, 2022 |
| Martha Beard | $5,000 | December 29, 2022 |
| Jeanne Berdik | $50 | December 29, 2022 |
| constance Bentzen | $100 | December 28, 2022 |
| Janet Wagner | $100 | December 27, 2022 |
| Paul DePasquale | $100 | December 27, 2022 |
| Ronald Dean | $100 | December 27, 2022 |
| Ryan Mckenna | $250 | December 27, 2022 |
| Anne Thomas | $100 | December 27, 2022 |
| Annie & Joe Schlafly | $250 | December 23, 2022 |
| John Schlafly | $100 | December 22, 2022 |
| Chris Parker | $500 | December 22, 2022 |
| Charles Snyder | $250 | December 22, 2022 |
| Kathleen Gavigan | $1,000 | December 20, 2022 |
| Jeffrey Markel and Carol Robinson | $250 | December 20, 2022 |
| Dolly Gee | $100 | December 20, 2022 |
| Peter & Gracia Sheptak | $100 | December 20, 2022 |
| Ellen Doyle & Lawrence Frolik | $300 | December 20, 2022 |
| Doug & Leslie Kittenbrink | $250 | December 20, 2022 |
| Kathleen Cecil | $75 | December 20, 2022 |
| Tim and Ann Slavish | $100 | December 19, 2022 |
| Adrian & Fran Chesler | $100 | December 19, 2022 |
| Chris Gillotti | $100 | December 18, 2022 |
| BARMAK BEHDADNIA | $200 | December 17, 2022 |
| KARL Fromm | $100 | December 16, 2022 |
| Helen & Stephen Casey | $1,000 | December 15, 2022 |
| David & Lynnae Evans | $500 | December 14, 2022 |
| Lois & Geoff Foley | $100 | December 14, 2022 |
| Mary & Harry Wagner | $200 | December 14, 2022 |
| Stefano and Maria Bartoletti | $300 | December 14, 2022 |
| Raymond Smith | $200 | December 14, 2022 |
| Margaret Runnette | $50 | December 14, 2022 |
| Merrie & Stuart Libicki | $50 | December 12, 2022 |
| Joan & John Ammer | $100 | December 12, 2022 |
| Edwin Strassburger | $100 | December 12, 2022 |
| Bruce & Virginia Fickman | $100 | December 12, 2022 |
| David Goldman & Judith Esman | $500 | December 12, 2022 |
| Denise & John McCarthy | $100 | December 12, 2022 |
| Kris Davitt | $500 | December 12, 2022 |
| Madelyn Curtin | $35 | December 12, 2022 |
| Herb Howe | $200 | December 08, 2022 |
| GEORGE SCHREIBEIS | $125 | December 08, 2022 |
| Aileen La Tourette | $100 | December 08, 2022 |
| Richard Rosenblatt | $200 | December 07, 2022 |
| Naomi Herman | $50 | December 07, 2022 |
| James Fanning | $200 | December 07, 2022 |
| Jeanie Schlafly | $375 | December 07, 2022 |
| Barbara Milton | $100 | December 07, 2022 |
| Kearney & Jane McNeil | $100 | December 07, 2022 |
| Joan Ewing | $150 | December 07, 2022 |
| Calvin & Patricia Harvey | $100 | December 07, 2022 |
| Gwen Robosson | $100 | December 07, 2022 |
| The Herald Family | $250 | December 07, 2022 |
| Mary Ann Templeton | $50 | December 06, 2022 |
| Dick and Christie Findlan | $200 | December 06, 2022 |
| Michele and John Bender | $150 | December 06, 2022 |
| Anonymous | $100 | December 06, 2022 |
| Joseph Stuligross | $250 | December 06, 2022 |
| Anonymous | $100 | December 06, 2022 |
| Berenice Wilkinson | $100 | December 05, 2022 |
| Liza Brown | $50 | December 05, 2022 |
| Victoria Fromm | $100 | December 05, 2022 |
| Dana Dupre and Justin Ehrenwerth | $1,000 | December 05, 2022 |
| Susan Gilmore | $100 | December 05, 2022 |
| bernard McGinley | $50 | December 05, 2022 |
| ELIZABETH Wainwright | $200 | December 05, 2022 |
| John Myers | $150 | December 05, 2022 |
| Pamela Meadowcroft | $100 | December 05, 2022 |
| Jane & Mike Waller | $100 | December 05, 2022 |
| Jordan & Erika Strassburger | $350 | December 05, 2022 |
| Sarah & James Cauley | $300 | December 05, 2022 |
| Bernard & Anne McKenna | $50 | December 05, 2022 |
| Arleen & Donald Wagner | $500 | December 05, 2022 |
| Roslyn & Herschel Segall | $150 | December 05, 2022 |
| Paul & Penny McKenna | $200 | December 05, 2022 |
| Hugh & Carole Curtin | $500 | December 05, 2022 |
| David & Colleen O'Brien | $150 | December 05, 2022 |
| Julia & Larry Ondako | $300 | December 05, 2022 |
| David & Michaileen Vilsack | $150 | December 05, 2022 |
| Charlene & Gus Marquart | $100 | December 05, 2022 |
| Albert & Katherine Lewis | $100 | December 05, 2022 |
| Edward Ifft | $100 | December 05, 2022 |
| Alex & Leslie Sciulli | $25 | December 05, 2022 |
| Elliott & Dee Oshry | $100 | December 05, 2022 |
| Daniel Kamin | $200 | December 05, 2022 |
| Jane & Howard Voigt | $100 | December 05, 2022 |
| Rosemary & Bill Getsie | $50 | December 05, 2022 |
| Francis & Gilda Hurite | $50 | December 05, 2022 |
| Carol Heppner | $50 | December 05, 2022 |
| Nancy & Thomas Kelly | $100 | December 05, 2022 |
| Shirley & Stefan Fromm | $500 | December 05, 2022 |
| Karl & Marcia Kline | $200 | December 05, 2022 |
| Audrey McKenna | $200 | December 05, 2022 |
| Adria Kelleher & Gerald Krakoff | $100 | December 05, 2022 |
| Lindsey E Herman | $50 | December 02, 2022 |
| Edward & Patsy McKenna | $500 | December 02, 2022 |
| Janet & John Conomos | $200 | December 01, 2022 |
| Matthew Rudzki | $50 | November 30, 2022 |
| James Brown | $100 | November 29, 2022 |
| Marie Hinchlidfe | $100 | November 29, 2022 |
| Lynn Detrick | $100 | November 29, 2022 |
| DONNA ROSENWASSER | $100 | November 29, 2022 |
| Barbara Maher | $250 | November 29, 2022 |
| Kathleen Laboon | $50 | November 28, 2022 |
| Louis Certo | $50 | November 28, 2022 |
| Malin & Devin Delling Fromm | $100 | November 26, 2022 |
| Ann Fromm & Bill Payne | $20,000 | November 24, 2022 |
| Anonymous | $10 | November 23, 2022 |