By Katie Busch, IRSF Program Coordinator –
During the last week of April 2022, the International Rett Syndrome Foundation welcomed more than 500 members of the Rett community to the ASCEND 2022 Rett Syndrome National Summit. Held in Nashville, Tennessee, at the Gaylord Opryland Resort & Convention Center, the sold-out summit marked the first in-person event hosted by IRSF in more than six years.
The summit kicked off on Wednesday evening with a welcome reception that had all the excitement of a family reunion. The Gaylord Opryland’s Water’s Edge Restaurant was buzzing as families, industry professionals, clinicians, and researchers made new connections and renewed old ones. After showing proof of adherence to COVID-19 protocols and receiving their credentials, attendees descended the steps to this waterside reception filled with food, fun, and families united in the shared experience of caring for a loved one with Rett syndrome. It was a special night not only for the families, but for the nearly 200 individuals from our Centers of Excellence network, the international research community, and representatives from industry who joined the festivities after attending the IRSF Scientific Meeting in the days before ASCEND.
The next morning, the conference officially began. With an introduction from IRSF CEO Melissa Kennedy, attendees were treated to a powerful welcome from event co-chairs, IRSF Board Chair Bill Babiarz and Mickie McCool. They shared a message of belonging that resonated with attendees because Rett syndrome does not discriminate, it impacts families from all backgrounds and beliefs.
Thus began two and a half days of thoughtful and educational programming presented by experts from around the world on the topics most important to caregivers, parents, educators, therapists, researchers, and clinicians. With 45 speakers and more than 23 hours of expert content, attendees had the opportunity to learn about topics including communication in Rett syndrome, setting up a special needs trust, and everything in between.
There wasn’t a dry eye in the main ballroom after Chris Ulmer, founder of the Special Books for Special Kids movement, finished his Keynote speech, The Power of Acceptance and Positivity. Chris beautifully conveyed the impact of a deeper sense of belonging and made everyone feel seen and embraced.
Another memorable moment was when Melissa Kennedy shared IRSF’s vision and commitment to empowering families with information and accelerating research towards a cure for Rett syndrome. Her speech set the stage for one of the most impactful presentations of the Summit. With the help of Leslie Greenfield, IRSF honored Dr. Alan Percy’s life-long dedication and work for the Rett syndrome community. Photos of Dr. Percy’s many grateful patients and quotes from his colleagues filled the screen demonstrating the incredible contributions he has made to the field of Rett syndrome research and clinical care. Dr. Percy was greeted with a standing ovation from the entire room. IRSF is privileged to assume stewardship of the Natural History Study database and will continue to build upon Dr. Percy’s strong foundation and legacy.
When attendees needed a break from the presentations, the exhibitor zone was ready for them. Attendees had the opportunity to connect with sponsors, industry leaders, and more in the lobby outside the main ballroom. Exhibitors in attendance included:
Taysha Gene Therapies | Acadia Pharmaceuticals Inc. | PRC-Saltillo | Tobii Dynavox | Raising a Hand | Harvard Brain Tissue Resource Center | EveryLife Foundation for Rare Diseases | Abram’s Nation | Alliance Rehab and Medical Equipment | Regional Rett Syndrome Associations: Midwest Rett Syndrome Foundation, New Jersey Rett Syndrome Association, Rett Syndrome Angels, and Rocky Mountain Rett Association
Each exhibitor booth offered a hands-on experience with equipment, fun photo opportunities, and resources that attendees could take with them. One of the most popular booths was, of course, Dave Clements! At his pop-up photo studio, Dave captured family photos and photos with longtime friends, creating lifelong memories for the Rett community. As always, his pictures captured the joy and love in the faces of those being photographed.
If you haven’t received your ASCEND photo from Dave, please email him at [email protected].
Attendees also got the opportunity to network and connect with other families during evening social activities. Networking among the families, clinicians, and industry professionals has always been a valued aspect of the national summit and this year was no different. On Thursday evening, attendees came together for the Rettworking event, a time to split into small groups for discussions and the sharing of ideas. Rettworking was specifically designed to provide a time for participants to have honest, open, and judgment-free conversations either by topics or by age groups. And a bonus this year – keynote speaker Chris Ulmer returned to the summit for a special meet and greet and bedtime story reading for those with Rett syndrome. His connection with the girls and boys was a treasured moment.
By Friday evening attendees were ready to kick up their feet to spend some time celebrating and The Purple Party was just the occasion! Kevin Black kicked off the evening with a wonderful set of music with a message of understanding, love, and hope that left the audience touched. Families were all smiles as they took to the floor to dance dressed in their favorite purple outfits, enjoying the moment to solidify their new and old friendships.
The summit came to an end on Saturday morning with sessions focused on one topic: Communication. Using the recently published Rett Syndrome Communication Guidelines as a roadmap, presenters hosted smaller, interactive sessions on low-tech and high-tech communication. The tools offered could be used immediately by the families, therapists, caregivers, and communication partners, and many families picked up their own copy of the Communications Guidelines and information about our Speech-Language Pathologist Continuing Education program to share with their care team.
Attendees also had the chance to explore the interactive room with representatives from Tobii Dynavox, SmartBox, and PRC-Saltillo showing off devices for everyone to try. Lonnie and Sarah Morrison, parents to Savannah, were also on-hand to share their DIY adapted toys and switches with the community. They presented their tips, tricks, and ideas at the Communication Fair so that all our families can help their loved ones with Rett find joy through toys. Savannah even got to show attendees how she uses a button to shoot her dad with the nerf gun!
All the touching moments, lifelong relationships, knowledge, and experiences made the ASCEND 2022 Rett Syndrome National Summit an experience to remember. The expertise shared and connections made invigorated industry professionals, researchers, clinicians, and families alike. Nowhere else can the Rett community connect faces with data or personally thank those who are investing time, money, and knowledge to finding treatments and one day a cure for Rett syndrome. The need for this connection was proven by the 500 in-person attendees, more than 150 attending for the first time, making this summit one of the most well attended to date. ASCEND 2022 was inspiring, and now more than ever, IRSF remains committed to going ALL IN for our families, for research, and for a cure for Rett syndrome.
Thank you so much to all the volunteers, advisors, staff, committees, and community supporters who made this event possible.
Thank you to the beautiful and BIG Gaylord Opryland Resort & Convention Center, whose staff worked tirelessly with us to ensure that guests would have a unique and memorable experience at ASCEND.
Thank you to our sponsors:
Taysha Gene Therapies
Beta Sigma Phi, Hive Networks, & Novartis
EveryLife Foundation, PRC-Saltillo, & Tobii Dynavox