News and Events
Glowfari Family Event November 29, 2026
Oakland Zoo – Snow Room
In gratitude and appreciation for Rett Syndrome families, supporters, and friends of the Katie Nues Foundation and UCSF Oakland Rett Clinic.
Arrive 4PM, Dinner 4:45PM, then off to the Glowfari zoo experience! Extended family members welcome. Limited tickets available for this event. The night includes dinner, parking, and Glowfari Lantern tickets. Hope you can join us! https://knfzoo26.auctria.events
Annual Golf Tournament September 14, 2026
The Katie Nues Foundation Annual Charity Golf Tournament came to a successful and memorable close at the beautiful Claremont Country Club in Oakland, CA, on September 14, 2026. It was a wonderful day filled with great golf, delicious food, camaraderie, and generous support from our golfers, sponsors, and volunteers. From the BBQ lunch and friendly scramble to the evening dinner, drinks, and prizes, every moment helped make this event truly special. Most importantly, the tournament brought our community together to raise vital funds for Katie’s Clinic for Rett Syndrome and related disorders at UCSF Benioff Children’s Hospitals, supporting both patient care and research. We are incredibly grateful to everyone who contributed to the success of this year’s tournament and look forward to welcoming you back next year. Set your calendar for September 13, 2027!
Local Teen Launches Mission to Help Children with Disabilities in the Philippines
Before heading off to college, high school senior Abby Nues is embarking on a heartfelt mission inspired by her sister, who has Rett Syndrome, a rare neurological disorder that affects motor and communication skills. Watching her sister Katie navigate daily life with the help of specialized equipment has opened Abby’s eyes to the stark differences in access to care around the world.
“Here in the United States, we have access to wheelchairs, standers, and other adaptive tools that make daily life more manageable,” Abby said. “But in the Philippines, many children and adults with disabilities don’t have any of these resources.”
Determined to make a difference, Abby has partnered with a mother in the Philippines whose child also has Rett syndrome and who works closely with the Philippine Society for Orphan Disorders. Leading this effort, Abby is launching a collection drive to gather gently used mobility and medical equipment, such as wheelchairs, walkers, standers, and therapy supplies, as well as financial donations. Her goal is to fill and ship a cargo container of supplies to communities in the Philippines where families often go without even the most basic support.
Abby hopes her project will not only provide life changing equipment but also raise awareness about the global disparities faced by people with disabilities.
“This is my way of giving back before I begin college next fall semester,” she said. “If we can share what we already have, we can help others live with dignity and hope.”
Community members interested in contributing equipment, supplies, or donations can contact Abby at (see flyer below) for drop-off locations and details on how to help.
DID YOU KNOW? Exciting potential therapy news!!
One FDA approved drug (Daybue) is available for people with Rett syndrome, and 2 gene therapy clinical trials are currently enrolling: Neurogene and Taysha (2025)
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.
Spirit of Giving
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.
How to Reach Us
jnues@katienuesfoundation.org
Katie’s Clinic Achievements
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Medical Home Multi-Disciplinary Care Model
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Clinical Trial Site
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Published Therapeutic Research
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Advocacy
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Clinical Research Center of Excellence Award (2017 to present)
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Primary incubator for development of internationally recognized Rett Syndrome Primary Care Guidelines (2019)
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Offsite Patient Family Annual Picnic and Education Day (2019, 2022, 2023, 2024, 2025)
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National Model Clinic for Best-in-Class Multi-disciplinary Care and Research (2004 – present)
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International Rett Syndrome Foundation certified Registry Data Collection Site (2023)
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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:
• Communication
• Mobility
• Socialization
• Attention to apraxia/anxiety/neurosensory
regulation
• 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!
