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A Cure for Gem

A campaign by: Daniela & Michael La Salle / $20,000 Goal
90 Donors
Raised Percent :
100%

100% Funded
, United States (US)
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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

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Donation Amount
Minimum amount is $ Maximum amount is $10000
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Name Donation Amount Date
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