News and Events
Annual Golf Tournament September 14, 2026
We are so excited to invite you back to the annual Katie Nues Foundation Charity Golf Tournament! This year we’re teeing off at the beautiful Claremont Country Club in Oakland, CA on Monday, September 14, 2026.
We’ve got a great day in store, including:
• A BBQ lunch to kick things off
• A fun, friendly golf scramble with great company
• Drinks, dinner, and prizes to celebrate afterward
You’ll be playing a fabulous round at Claremont Country Club (one of just 15 clubs in The Alister MacKenzie Society with certified MacKenzie course designs), all while helping raise funds for the Katie Nues Foundation, benefitting Katie’s Clinic for Rett Syndrome and related disorders in both patient care and research.
Grab your foursome and join us! Our tournament sold out last year, so we encourage you to sign up early to lock in your sponsorship and tickets.
We can’t wait to see you out on the golf course in support of Katie’s Clinic for Rett Syndrome at UCSF Benioff Children’s Hospitals.
Golf Tournament Schedule: REGISTER HERE
10:30 AM – 11:30 AM | CHECK-IN, CART ASSIGNMENTS, DRINKS, PUTTING GREEN
11:15 AM – 12:15 PM | “OUR WHY” BBQ LUNCH
12:15 PM | CALL TO CARTS
12:20 PM | PROCEED TO HOLE ASSIGNMENTS
12:30 PM | SHOTGUN START
4:45 PM – 7:00 PM | RECEPTION & PRIZES
19TH HOLE FUN AND ACTIVITIES FOLLOWING THE SCRAMBLE TOURNAMENT WILL INCLUDE OPPORTUNITY DRAW, FINAL GIVES AND GOLF PRIZES
DRESS CODE POLICY – Men – NO SHORTS
The following items are not permitted at any time:
- Denim of any kind or color
- Men’s headwear and women’s sports hats, visors or caps worn inside the Clubhouse
- Visors or caps worn backwards
- Tee shirts (including under sweaters or jackets) except at the Racquet Sports Facility, Aquatics Facility and Fitness Center
Clubhouse Main Floor
- Women may wear skirts, dresses, slacks including capri length, blouses, sweaters, and jackets.
- Men and boys 12 and older are required to wear long pants and jackets on the main floor at all times.
- Golf Shoes with spikes are not permitted anywhere on the main floor.
Grill, Grill Bar, President’s Room and Golf Course
- Attire shall be appropriate and in good taste. Men and boys are permitted to wear collared shirts, turtlenecks or mock turtlenecks. Shirts must be tucked in, even if designed to be worn un-tucked. Long pants are required at all times. Jackets are not required. Soft spikes golf shoes or athletic shoes are allowed. Only soft spikes, golf shoes or athletic shoes are permitted on the golf course.
- Open-toed shoes or sandals may not be worn in these areas.
- Women and girls are permitted to wear tops with or without a collar or sleeves. Tops must be tucked in, even if they are designed to be worn un-tucked. Slacks and capri pants are permitted. The appropriate length for any shorts, skorts or skirts is five inches or less above the middle of the knee. Designer open-toed shoes and sandals are permitted in the Clubhouse.
The following items are not permitted in these areas:
- Clothing that exposes the midriff, such as halter tops or crop top
- Shorts after 5:00pm, casual open-toed shoes such as flip-flops
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
-
Medical Home Multi-Disciplinary Care Model
-
Clinical Trial Site
-
Published Therapeutic Research
-
Advocacy
-
Clinical Research Center of Excellence Award (2017 to present)
-
Primary incubator for development of internationally recognized Rett Syndrome Primary Care Guidelines (2019)
-
Offsite Patient Family Annual Picnic and Education Day (2019, 2022, 2023, 2024, 2025)
-
National Model Clinic for Best-in-Class Multi-disciplinary 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:
• 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!
