I was diagnosed with Rett Syndrome when I was two years old. Rett is a debilitating neurological disorder which has taken away many things. It has trapped me in a body that will not work for me. When I was five, chewing became too hard and now I have a feeding tube that nourishes me. I have been going to physical, occupational, speech, and horse therapy for over 13 years. Therapy is and will always be a part of my life. It allows me to slowly progress with small skills that you may take for granted, like walking, reading, and communicating. Many of my Rett sisters have seizures, GI problems, scoliosis, and wheelchairs. Rett has also given me many things. It has given me a community that surrounds me with faith and love. I have teachers who believe in my ability to learn, therapists who keep pushing me to reach new goals, and doctors who work with my family to provide the best care. Rett may have stolen my voice, but it has not stolen my ability to teach others through my life. I am in here. I can understand you. I know researchers need funds and prayers for a cure. Please support us in both ways, because I believe in miracles--a cure is on the way!

HELP US BUILD A FUTURE FULL OF HOPE

We are in our second year of collaborating with UAB’s Center for Engagement in Disability Health and Rehabilitation Sciences in developing our online platform WINNERS (Wellness Innovative Network- a Nurturing Environment for Rett Syndrome) and there is still a lot of work left to do.  

Through the WINNERS initiative, we have completed a comprehensive review of physical activity interventions in Rett syndrome, conducted stakeholder interviews, and convened a national expert panel to identify priorities for future research. These efforts are now informing the development of a telehealth program designed specifically for individuals with Rett syndrome and their families.

For the past 13 years, our mission has been simple yet urgent: to raise awareness, support families, fund research, and strengthen the Rett Clinic at Children’s of Alabama.  We are deeply grateful to TEAM SUKI for making this work possible and for helping move the field toward more accessible and family-centered interventions.

We invite you Help Us Build a Future Full of Hope featuring 12 Days of Bourbon. 1 Cause. Endless Hope.

Giving is more than donating-it is making a real difference. Your help is our hope.

“Because of the generosity of the Suki Foundation, we are taking important steps toward developing new opportunities for individuals with Rett syndrome to participate in meaningful activities and improve their quality of life.” 

-Christen Mendonca, Scientist I

If you or your organization have any questions or would like to support Team Suki, please contact Mindy Wald at mindy.wald@childrens.org or (205) 638-9956.

With gratitude,

Marie & Brian Bateh

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A few words from Dr. Percy

The Rett syndrome (RTT) clinical research program at COA and UAB continues to be at the forefront of efforts to understand this unique disorder and provide assurance of clinical trial readiness even under the unexpected difficulties related to the current viral pandemic. We continue to provide active care for individuals and their families with RTT, even though in some instances this has necessitated telemedicine and other remote assessment capabilities for families who would have to travel long distances to be seen. We continue to provide support both locally and throughout the US, even occasionally responding to requests from international sites. We have been extremely fortunate to have Dr. Amitha Ananth, a pediatric neurologist and geneticist, engage with us over the past three years. More recently, Dr. Emily Gantz, also a pediatric neurologist at COA and UAB, has joined us to enhance these capabilities. As we engage in an increasing number of treatment trials seeking to provide improvements in RTT, we must ensure strong nursing and physician involvement in these critically important endeavors. As such, it has become even more important to stimulate financial support for maintaining and expanding these services. Only in this way can we expect to offer the best opportunities for improving the lives of those affected by this severe neurodevelopmental disorder and that of their families who must deal with the multiple difficult concerns on a never-ending basis.

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