Nearly a year and a half has passed since Alice was diagnosed with Rett Syndrome, a rare genetic neurological disorder. While she’s made positive strides, the past year has not come without stark challenges and further regression. It’s hard to ignore her daily struggle with basic movements that we take for granted like using our hands, walking, and speaking. Imagine not being able to express essentials like thirst or pain, hoping someone will guess your need and help. We are frequently reminded that even the simple things are hard.
Despite the obstacles in her way, Alice’s joy, energy, and radiant smile has been a constant. Her daily positive attitude is a key part to her taking the steps toward improvement. Always working to further her development, she recently started a preschool program for children with special needs (which she loves) and is also learning to use an eye-gaze device to assist in her communication. Additionally, she has regular speech, occupational, hippo- (therapy on a horse), and aquatic therapies. She is by far the busiest person in our family!
While therapy will go a long way toward helping Alice, it is no substitute for a fundamental cure. Advancements in Rett Syndrome research continue by and large because of the generous donations made by yourself and others. These contributions directly fund 5 priority approaches to address the genetic core of Rett Syndrome: gene therapy, DNA editing, MECP2 reactivation, RNA modification, and protein replacement. These approaches are underway at 15 elite labs around the world offering the possibility of a profound reversal of symptoms, and perhaps an outright cure. We are extremely hopeful that one of these will work!
While our hopes are high, fundraising is the necessary foundation to change the lives of our Alice and 350,000 others living with Rett Syndrome. Last year, all of your overwhelming generosity raised nearly $75,000. This was invaluable to the Rett Syndrome Research Trust (RSRT) to fund lab equipment and a world-class research team making important advancements in each of the priority approaches. We are mere years away from something incredible reaching clinical trials, but to get there, we need your help once again. Please consider donating to open up a world where Alice can be whoever and whatever she wants to be.
(RSRT is a non-profit organization and all donations are 100% tax deductible.)
Thank you from the bottom of our hearts!
Allen, Kelsey, & Alice
|Laura House||$50.00||December 07, 2019|
|Jessica Madsen||$50.00||December 07, 2019|
|Diana Ecker||$300.00||December 06, 2019|
|Anne Freeman||$500.00||December 05, 2019|
|Chris Freeman||$100.00||December 05, 2019|
|Ali Trinh||$25.00||December 04, 2019|
|Troy Wallin||$100.00||December 04, 2019|
|Roberta Horne||$250.00||December 04, 2019|
|Amy Morse||$100.00||December 04, 2019|
|David Amiton||$50.00||December 04, 2019|
|Andrew Burkemper||$250.00||December 04, 2019|
|Caitlin White||$100.00||December 03, 2019|
|David Domreis||$500.00||December 03, 2019|
|Anonymous||$500.00||December 03, 2019|
|Lynn E Oveson||$10,000.00||December 03, 2019|
|Will Johnston||$100.00||December 03, 2019|
|Cyrus Press||$500.00||December 03, 2019|
|Shubham Mukherjee||$500.00||December 03, 2019|
|Suraj Sengupta||$500.00||December 03, 2019|
|Jasper Shen||$250.00||December 03, 2019|
|Carl Press||$100.00||December 02, 2019|
|Lindsay MacLarty||$250.00||December 02, 2019|
|Martin Rowland||$500.00||December 02, 2019|
|Carrie Foote||$250.00||December 02, 2019|
|$10,000.00||November 26, 2019|
|Kelsey & Allen Chu||$20,000.00||November 26, 2019|
|Edrian Colina||$5.00||November 25, 2019|
|Tim Freeman||$10.00||November 25, 2019|