Understanding Nutrition and Hormones in Schaaf-Yang Syndrome: Insights from United in Hope 2025

At the 2025 United in Hope Conference, Dr. Jennifer Miller and Michael Tan, RD, from the University of Florida, delivered a powerful session that shed light on two critical areas for people living with Schaaf-Yang syndrome (SYS): hormone health and nutrition. Their message was encouraging: targeted hormone therapy combined with individualized nutrition can make a profound difference in growth, development, and overall quality of life.

How Hormones Shape Life with SYS

Dr. Miller began with an in-depth look at the potential of oxytocin treatment in SYS. Early studies suggest that oxytocin may help improve food intake regulation, cognition, thermoregulation, muscle tone, and autism-related behaviors. These potential benefits are thought to stem from oxytocin’s role in supporting the maturation of neural networks. However, Dr. Miller emphasized that more SYS-specific research is needed to determine exactly how and when oxytocin is most effective—and stressed the importance of low-dose treatment rather than overwhelming the system.

She also noted that many individuals with SYS face hormonal deficiencies, including:

• Growth hormone deficiency – affecting height, muscle development, and metabolism
• Adrenal insufficiency – leading to fatigue and low stress tolerance
• Hypogonadism – impacting puberty and reproductive hormones
• Thyroid dysfunction – influencing energy, weight, and mood

Many of these imbalances can be treated effectively through hormone replacement therapy—helping to prevent complications and improve daily functioning.

Her takeaway: even subtle symptoms warrant regular endocrine evaluations for both children and adults with SYS, so treatments can be started as soon as possible. Watch the session here to learn more about hormone regulation in SYS.

Nutrition Strategies Designed for SYS

Following Dr. Miller’s presentation, Registered Dietitian Michael Tan shared practical strategies to address the unique nutritional needs of people with SYS. Because of hormonal differences and lower muscle mass, individuals with SYS may need fewer calories overall, but still require nutrient-rich meals to support healthy growth, energy, and development.

His recommendations included:

• Quality: Focus on lean proteins, non-starchy vegetables, and complex carbs. Limit refined grains, added sugar, and overly sweet foods.
• Quantity: Portions are generally smaller than in the general population. Limit fruit to twice daily.
• Balance: Include protein, fiber-rich carbs, healthy fats, and non-starchy vegetables at each meal.
• Variety: Introduce a wide range of flavors, textures, and foods early on to build acceptance and interest in diverse nutrition.

Tan also provided an example weekly meal-builder to help families plan balanced, varied menus and keep meals interesting over time. He stressed that nutrition plans should evolve alongside a child’s medical needs, growth, and lifestyle—with close collaboration between families, endocrinologists, and dietitians.

Watch the session here to learn more about nutrition recommendations for children and families with SYS. 

A Whole-Body Approach to SYS

Both speakers reinforced that hormone health and nutrition aren’t isolated issues—they work hand in hand.

For example:

• Growth hormone therapy can increase lean body mass, making physical therapy more effective
• Balanced nutrition supports stable energy, which in turn enhances focus and participation in therapies
• Addressing hormone deficiencies can reduce symptoms that make feeding challenges more difficult

This integrated approach allows families to address not just one aspect of SYS, but the whole person. 

Bottom Line: Early, Personalized Care Changes Lives

While SYS presents complex challenges, this session left attendees with a hopeful message: early, targeted interventions can help individuals with SYS thrive.

Thanks to ongoing research and dedicated advocacy, we’re learning more each year about how to care for people with SYS—medically, nutritionally, and holistically. As Dr. Miller and Michael Tan reminded us, families who stay proactive, ask questions, and build strong care teams are giving their loved ones the best possible chance for success.

Learn more by watching this session and more on the FPWR SYS Youtube channel by clicking the link below.

Want to learn more about SYS and how you can support ongoing research? Explore the latest projects and resources at fpwr.org.