Elli turned eight years old this year. Like everyone we had to figure out how to deal with the pandemic and adjust how we lived. Elli continued to work diligently with her many therapists and enjoyed her virtual learning sessions with her wonderful teachers. Her seizures have gotten worse and keep her very tired most days. However, we are truly blessed that Elli avoided any significant hospitalizations so far this year. So, we celebrate and cherish special moments when she is alert. We struggle through days when seizures overwhelm her. However, we are not giving up and we will continue to fight for her so that one day she can enjoy being a kid, a big sister, precious daughter, spoiled granddaughter, and bratty pre-teenager. You can see more about Elli and our family here: https://youtu.be/pebODCUFiLU
Unfortunately, we were not able to host her big “For1Day” fundraiser. However, we ask you to join us to find a cure for Elli through your donation. There is a very promising project that is underway at the University of Massachusetts Medical School. A promising approach to treating MECP2 Duplication Syndrome is to reduce levels of the MECP2 protein by silencing gene expression. One way to silence genes is through editing RNA using special molecular scissors. The scientist doing this work at UMASS is Dr. Anastasia Khvorova, who is a pioneer in this field and is part of the RNA Therapeutics Institute at UMASS that brings together a critical mass of scientists with RNA expertise. With continued funding and research progress, this exciting approach could lead to clinical trials for MECP2 Duplication Syndrome.
The research requires significant funding and families around the world are trying desperately to fund the research. It is exciting to see another promising research project to ultimately find a cure for this vicious disorder. However, we need your help. Let’s fight together For 1 Day.
Elli's Hero
7 Donors
Elli's Champion
0 Donors
Elli's Believer
9 Donors
Elli's Supporter
28 Donors
Name | Donate Amount | Date |
---|---|---|
Ron Yuen | $50.00 | January 16, 2021 |
Sinae Lee | $100.00 | January 01, 2021 |
Annie Lee | $100.00 | December 29, 2020 |
Annie Lee | $100.00 | December 29, 2020 |
Joanne Chuang | $200.00 | December 25, 2020 |
Clara Choy | $250.00 | December 20, 2020 |
Catherine Ball | $25.00 | December 18, 2020 |
Anonymous | $100.00 | December 18, 2020 |
Sean Kim | $5,000.00 | December 18, 2020 |
Bonnie Chau | $100.00 | December 14, 2020 |
Andrea Estrada | $250.00 | December 12, 2020 |
Patrick Tinsley | $100.00 | December 12, 2020 |
Valerie Adair | $100.00 | December 12, 2020 |
Soojin Uh | $100.00 | December 12, 2020 |
viki Wolfe | $100.00 | December 12, 2020 |
Veronica Vazquez | $100.00 | December 12, 2020 |
Anonymous | $15,000.00 | December 11, 2020 |
Richard Mills | $100.00 | December 10, 2020 |
Alexis Briggs | $150.00 | December 09, 2020 |
Roxanne Basgen | $100.00 | December 07, 2020 |
Anonymous | $160.00 | December 06, 2020 |
Anonymous | $250.00 | December 05, 2020 |
Jongmin Kim | $250.00 | December 05, 2020 |
Jung-In Kim | $200.00 | December 05, 2020 |
Anonymous | $250.00 | December 04, 2020 |
DANIEL MITCHELL | $250.00 | December 04, 2020 |
Yijung Byun | $1,000.00 | December 03, 2020 |
Eric Schranz | $100.00 | December 03, 2020 |
Anonymous | $100.00 | December 03, 2020 |
Ashley Robb | $50.00 | December 03, 2020 |
Jackie Choi | $200.00 | December 03, 2020 |
Hadi Garakani | $250.00 | December 03, 2020 |
Cristina Likins | $200.00 | December 02, 2020 |
Julie Pham David Bui | $150.00 | December 02, 2020 |
Mitzi Muirhead | $50.00 | December 02, 2020 |
Mike Aviles | $1,000.00 | December 02, 2020 |
Crystal Cardenas | $100.00 | December 02, 2020 |
Emily Taylor | $50.00 | December 02, 2020 |
Peter Yoon | $250.00 | December 02, 2020 |
Anonymous | $25.00 | December 02, 2020 |
Jennifer Chao | $1,000.00 | December 02, 2020 |
Anonymous | $100.00 | December 02, 2020 |
Philip Odusote | $100.00 | December 02, 2020 |
Geny Kim | $25.00 | December 02, 2020 |
Anonymous | $100.00 | December 02, 2020 |
Alicia Korth | $1,000.00 | December 02, 2020 |
Terry Han | $150.00 | December 02, 2020 |
Lila Hwang | $100.00 | December 01, 2020 |
Bernard Hewett | $1,000.00 | December 01, 2020 |
Anonymous | $50.00 | December 01, 2020 |
Chan Park | $250.00 | December 01, 2020 |
Anonymous | $50.00 | December 01, 2020 |
Ann Do | $100.00 | December 01, 2020 |