Family Lounge

Ancillary programming

In addition to the main conference educational sessions, additional programming is available throughout the conference in the Family Lounge (Petite Ballroom), breakout rooms, and the foyer area. The Family Lounge also offers ongoing unstructured activities throughout the day, including crafts, snacks, a quiet corner, and sensory toys and equipment.

Not all ancillary programming takes place in the Family Lounge — see each activity below for its specific location. Additional programming, including visits from Stripey the Zebra and superheroes, to be confirmed.

Saturday, June 27

9:30–10:30am (U.S. Eastern Time)
🤖 "4-H Head Maker Lab" with MSU Extension
Location: Michigan IV

This fun session provides an engaging space for our Super Siblings, with activities designed to spark creativity and curiosity. Create your own "junk drawer robot" — design and build simple creations using everyday materials. This flexible space allows for exploration, play, and connection in a relaxed and supportive environment.

9:30–10:30am (U.S. Eastern Time)
🐰 "A 4-H Sensory Experience" hosted by MSU Extension
Location: Family Lounge (Petite Ballroom)

This inclusive, youth-friendly space offers a calming environment for participants who may benefit from a sensory break. Attendees can engage in hands-on arts and crafts, explore tactile activities, and interact with gentle 4-H show rabbits in a supervised setting. The space is designed to support relaxation, reduce overstimulation, and create a welcoming experience for youth of all abilities.

11:00am–12:00pm
🐴 All about therapeutic riding with Jennifer Beyer, Program Director, Therapeutic Riding Inc. (TRI)
Location: Michigan IV

Discover how horses are changing lives! Join Jennifer Beyer, Program Director at Therapeutic Riding Inc. (TRI), for an engaging look at how equestrian activities open new doors for people with disabilities. Based in Ann Arbor, Michigan, TRI serves participants ages 4 to 70+ across a wide range of cognitive, physical, and emotional abilities. Explore the real-world benefits of adaptive riding, equestrian sports, and equine-assisted learning — and walk away with practical insights on safety and how to match the right program to each participant's unique needs.

1:00–2:00pm (U.S. Eastern Time)
🙆‍♀️ Ask the physical therapist with Heather McLean PT, MPT, CBIS
Location: Family Lounge (Petite Ballroom)

Heather McLean PT, MPT, CBIS will lead a practical, interactive session focused on how to protect our bodies as both we and our children grow and age. As our ASXL loved ones grow, so do the physical demands of caregiving — and this session is designed to support you. With a focus on real-life techniques and body awareness, this is an empowering opportunity to build confidence, prevent injury, and care for your loved one in a way that supports everyone's well-being. Submit questions for Heather here

2:00–4:00pm (U.S. Eastern Time)
🐶 Come visit with Canines for Change
Location: Registration Area (Foyer)

During a busy conference day, pause, recharge, and enjoy a peaceful moment with the gentle facility dogs and service dogs in training from Canines for Change. Whether you're seeking a quiet cuddle, a soothing sensory experience, or a relaxed way to connect without words, this is a chance to reset and feel supported. All are welcome to stop by!

Sunday, June 28

9:30–10:00am (U.S. Eastern Time)
🎶 Music therapy with Mott Children's Hospital
Location: Family Lounge (Petite Ballroom)

Join Maleea Roy from Mott Children's Hospital for a welcoming and interactive session introducing the power of music therapy for individuals with ASXL-related disorders. Through playful rhythms, familiar melodies, and hands-on participation, this session highlights how music can support communication, creative expression, and connection — no musical experience needed. Designed to be inclusive and engaging for all ages and abilities, with insights families and professionals can carry into everyday life.

10:30am–1:00pm (U.S. Eastern Time)
🩺 Office hours with gastroenterologist Dr. Alejandro Velez Lopez
Location: Michigan IV
⚠️ Sign-up required: Sign up link will be shared after research appointment schedules have been distributed (week of June 15)

We are honored to offer a unique opportunity to connect one-on-one with Dr. Alejandro Velez during dedicated GI "office hours." In addition to his conference presentation on gastrointestinal complications and motility in ASXL-related disorders, Dr. Velez has set aside time to meet individually with families to answer questions, discuss concerns, and offer personalized insight. This is a rare chance to have a meaningful, face-to-face conversation in a supportive setting.

Please note: While Dr. Velez aims to provide individualized support and education, he is unable to provide medical advice. This is not intended to replace a doctor visit. If you have immediate concerns about your child's health, please contact your established providers for medical advice.