We celebrated Gemma turning 5 last week. This milestone has brought so many emotions. Gemma has grown so much this past year. She is stronger in her body, an excellent communicator, mostly with her body language but also doing amazing with her eye gaze device. This year has also brought out some devastating parts of her condition. We were very hopeful and naively confident that Gemma wouldn’t experience seizures, even though 80-90% of people with Rett Syndrome do. In February, she experienced the first one. We hoped it was an isolated incident but in May, she began having many more. We are working on different ways to treat her, now epilepsy. It feels surreal and hard to accept yet again, another diagnosis which really is just all part of Rett.
We are still in the process of trying to decide what would be best for Gemma as far as education goes. There seems to be a lot of talk about inclusion these days, but we don’t feel that is really the case for people like Gemma. Not only is it difficult to navigate a world with Rett, but even in our local schools. It’s devastating to know how limited options there are for your child. Unfathomably painful to hear schools you hope to send your child to, tell you that there are no children like yours at their school and aren’t willing to accommodate them. We have realized that there is so much more that needs to be done in our world for inclusion for people without a voice and with different abilities.
This year has brought big challenges our way, but also the biggest hope yet. Just last week, the first ever Rett patient was dosed in Tasha’s gene therapy trial. We are praying for this patient, her family and the whole Rett Syndrome community. This could change everything for so many of us. A few days ago, enrollment became open for patients in Nuerogene’s clinical therapy trial, the first gene therapy trial for Rett Syndrome the U.S. There is lots of momentum and we are hoping with everything we have for success. Gemma is a real life angel, but her having to live with Rett, truly feels like a nightmare.
We appreciate the generosity of all our friends and family who have supported and continue to support this research. It has made it possible to be where we are today with so much advancement towards a cure. We are truly closer than ever. There will be an update on June 28th on the progress of patient 1 in Taysha’s gene therapy trial. Please join us in praying for success.
After receiving Gemma’s diagnosis over 3 years ago, we committed to support Rett Syndrome Research Trust until a cure was a reality. We are hopeful that will be the case by her next birthday. Please consider donating if you are able to and or sharing the link for Gemma’s campaign.
Thank you,
Michael & Daniela
*For more information about Rett Syndrome and Rett Syndrome Research Trust, please visit reverserett.org
| Name | Donation Amount | Date |
|---|---|---|
| Michael La Salle | $1,000 | December 04, 2024 |
| Cristina Asaro | $100 | June 22, 2023 |
| Maria Russo | $50 | June 19, 2023 |
| Cristina Alderete | $50 | June 18, 2023 |
| Stephanie Medina | $30 | June 17, 2023 |
| Aitziber Oleaga | $50 | June 17, 2023 |
| Matthew Asaro | $100 | June 17, 2023 |
| Anna Asaro Andrew Baket | $50 | June 17, 2023 |
| Paul Crimi | $50 | June 17, 2023 |
| Natalia Molina | $10 | June 17, 2023 |
| Raquel Castiñeira Lemus | $50 | June 17, 2023 |
| Hector Arias | $250 | June 17, 2023 |
| Elaine Sardo | $40 | June 16, 2023 |
| Sylvia Asaro | $50 | June 16, 2023 |
| Russell Grassa | $250 | June 16, 2023 |
| Anonymous | $100 | June 16, 2023 |
| Sylvia Asaro | $0 | June 16, 2023 |
| Sylvia Asaro | $0 | June 16, 2023 |
| Sylvia Asaro | $0 | June 16, 2023 |
| Nuccia Asaro | $200 | June 16, 2023 |
| Anonymous | $100 | June 16, 2023 |
| Frank La Salle | $1,000 | June 16, 2023 |
| Eliana LaSalle | $8 | February 09, 2023 |
| M M Tenney | $100 | February 06, 2023 |
| Jodi Beckett | $100 | November 30, 2022 |
| Silvia Frankenberger | $50 | November 30, 2022 |
| Lyndsay Neer | $100 | November 30, 2022 |
| Luca La Salle | $1,000 | November 29, 2022 |
| Susan Lucas | $100 | October 29, 2022 |
| Frank La Salle | $1,000 | October 28, 2022 |
| Tsu Dixon | $100 | October 27, 2022 |
| Nuccia Asaro | $100 | October 27, 2022 |
| Hector Arias Fraga | $250 | June 11, 2022 |
| Stephanie Medina | $25 | June 11, 2022 |
| Frank La Salle | $1,000 | June 11, 2022 |
| Angela Deluca | $100 | June 11, 2022 |
| Rebecca Hensley | $100 | June 11, 2022 |
| Briel Hernandez | $50 | June 11, 2022 |
| Frank Renwick | $250 | June 11, 2022 |
| Nuccia Asaro | $250 | June 11, 2022 |
| Christina Lewis | $25 | June 10, 2022 |
| Angela Zangari | $100 | June 10, 2022 |
| Mitchell Thorp Foundation | $2,200 | April 13, 2022 |
| M M Tenney | $100 | March 01, 2022 |
| Laura Vandegrift | $25 | February 04, 2022 |
| Frank La Salle | $1,000 | December 29, 2021 |
| Åse Helene Forfot | $25 | December 02, 2021 |
| Susan Lucas | $250 | December 01, 2021 |
| Ashley Collins | $25 | December 01, 2021 |
| Bibi Luko | $50 | December 01, 2021 |
| Erika Olayan | $50 | December 01, 2021 |
| Nuccia Asaro | $100 | December 01, 2021 |
| valerie serrano | $25 | December 01, 2021 |
| Kristin Trahan | $50 | December 01, 2021 |
| Eliana & Luca La Salle | $50 | November 30, 2021 |
| Michael La Salle | $1,000 | November 30, 2021 |
| Alex Creelman | $100 | November 30, 2021 |
| Andrea Ellis | $100 | October 02, 2021 |
| Dan LaSalle | $2,000 | September 28, 2021 |
| Rick Dickinson | $100 | June 16, 2021 |
| SG Plastering | $1,000 | June 16, 2021 |
| Sharon Gates Grundstrom | $50 | June 15, 2021 |
| Sylvia Asaro | $50 | June 15, 2021 |
| Anonymous | $50 | June 14, 2021 |
| Marialisa Grassa | $25 | June 14, 2021 |
| Anonymous | $100 | June 14, 2021 |
| Jonathan Ritchison | $100 | June 13, 2021 |
| Vicky Trask | $100 | June 12, 2021 |
| christopher grassa | $100 | June 12, 2021 |
| Susan Lucas | $100 | June 12, 2021 |
| Cristina Asaro | $100 | June 11, 2021 |
| Briel Hernandez | $100 | June 11, 2021 |
| James Alberts | $50 | June 11, 2021 |
| Justin LaSalle | $1,000 | June 11, 2021 |
| Maria and Paul Crimi | $30 | June 11, 2021 |
| Kim Phillips | $100 | June 11, 2021 |
| Angela Zangari | $100 | June 11, 2021 |
| Anonymous | $100 | June 11, 2021 |
| Anonymous | $100 | June 11, 2021 |
| Eliana & Luca La Salle | $88 | June 11, 2021 |
| Nuccia Asaro | $200 | June 11, 2021 |
| Russel Wurts | $250 | June 11, 2021 |
| Rachel Falk | $25 | June 10, 2021 |
| Leslie Smithwick | $100 | June 10, 2021 |
| Angela DELUCA | $100 | June 10, 2021 |
| Holly Alves | $25 | June 10, 2021 |
| Dan LaSalle | $250 | June 10, 2021 |
| Frank B La Salle | $1,000 | June 10, 2021 |
| Darin Blue | $100 | June 10, 2021 |
| Hector Arias | $250 | June 10, 2021 |
| Kristen Sacco | $100 | June 10, 2021 |