QUEEN OF HEARTS FUNDRAISER – SEPT 16, 2023
Be our guest for dinner, drinks and music while learning about Rett Syndrome and supporting UCSF Benioff Children’s Hospital Rett Syndrome Clinic and Research. Celebrate Katie’s 21st birthday, the queen of our hearts. Adults only!
If you’d like to join us, please send a note to firstname.lastname@example.org. If you can’t join us but would like to make a donation, please follow this link to PayPal.
DID YOU KNOW? Exciting potential therapy news!!
The FDA cleared Taysha Gene Therapy’s Investigational New Drug (IND) application for a study of pediatric patients in the U.S. August 14, 2023 – and UCSF potential future clinical trial site.
Learn from Dr. Jennifer Martelle Tu, UCSF’s Director of Katie’s Clinic for Rett Syndrome
This interview with Dr. Jennifer Martelle Tu covers some of the basics of Rett Syndrome, describes the exciting new developments in potential treatments and gives her view of what’s on the horizon as we combat this disease.
Listen to Dr. Jennifer Martelle Tu
On this podcast with KCBS, Dr. Tu explains what this rare condition is, the new therapy called DAYBUE, and what the approval means for patients and their families.
Why donate? Your funds all go to Katie’s Clinic for Rett Syndrome to cover the clinical care, research projects, and community education, that is not reimbursable by insurance or covered by grants. No family is ever turned away.
Medical Home Multi-Disciplinary Care Model
Clinical Drug Trials
Clinical Research Center of Excellence Award (2017 and 2021)
Primary incubator for development of internationally recognized Rett Syndrome Primary Care Guidelines (2019)
Offsite Patient Family Annual Picnic and Education Day (2019, 2022, 2023)
National Model Clinic for Best-in-Class Multidisciplinary Care and Research (2004 – present)
International Rett Syndrome Foundation certified Registry Data Collection Site (2023)
NIH funded – Natural History Study (2005 – 2021)
NO RETT SYNDROME PATIENT IS EVER TURNED AWAY THANKS TO YOUR GENEROSITY
Our Philosophy- The Enriched Environment
Research has documented that enriching the environment can improve the condition of Rett syndrome. Rett syndrome is not a degenerative condition, rather, nerve cells are small and underdeveloped. Through a process called neuroplasticity, neurons form new connections, allowing an individual to learn and to build new skills. We have compiled the elements of an enriched environment:
• Attention to apraxia/anxiety/neurosensory
• Optimal medical health
By integrating these elements into our patients’ lives, learning and literacy can follow. Appropriate therapies and the hard work of families greatly contribute to creating enriched environments for individuals with Rett syndrome. Years of experience have taught our team to presume competence in the abilities of these individuals. We believe!