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We’re gearing up for the ASCEND 2022 Rett Syndrome National Summit in Nashville!
GAYLORD OPRYLAND RESORT & CONVENTION CENTER
April 27-30, 2022

Designed to unite us as a community, this event will bring together parents, families, clinicians, researchers, and Rett organizations around the world. Together we can overcome the challenges of Rett syndrome and reach the summit of hope and healing–a world without Rett syndrome.

Top Reasons to Attend ASCEND!

Incredible Sessions

Rett Experts

Family Connections

Elegant Accommodations

Get registered with Early Bird Pricing!


 

SPEAKERS

ASCEND welcomes Huda Zoghbi, MD and Chris Ulmer as keynote speakers!

Huda Zoghbi
Dr. Huda Zoghbi is a professor in the departments of Pediatrics, Molecular and Human Genetics, and Neurology and Neuroscience at Baylor College of Medicine, the director of the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital, and an investigator of the Howard Hughes Medical Institute. She has been a pioneer in Rett syndrome research for nearly 40 years, and Dr. Zoghbi’s lab was responsible for the game-changing discovering of the gene that causes Rett syndrome. She has received numerous awards for her work in unlocking the genetic and molecular mysteries behind several devastating neurological disorders, including Rett syndrome.

Chris Ulmer
Chris Ulmer is the founder of the leading neurodiversity movement, SBSK (Special Books by Special Kids), which has surpassed 7 million followers in over 130 countries across the globe, with its videos being viewed over 2 billion times. Chris travels the globe meeting friends with a diagnosis and sharing their stories on social media. He believes that when we take the time to hear someone’s story and view life from their perspective, we learn and grow as humans making the world a better place. Together Chris and the SBSK community are promoting conversations on acceptance and inclusion around the world.

Check out Chris’ YouTube Channel.

At ASCEND, you will have access to leading Rett researchers, IRSF Centers of Excellence directors, and many speakers to encourage and equip you on your journey.

Alan Percy, MD

Alan Percy, MD

                   

Alan Percy, MD, a pediatric neurologist at the University of Alabama at Birmingham (UAB), attended medical school at Stanford, training in Pediatrics there and in Child Neurology at Johns Hopkins.  In 1983, he was one of three physicians to recognize Rett syndrome (RTT) in this country.  Thereafter, he pursued clinical and laboratory studies in RTT, encouraged Huda Zoghbi to conduct studies leading to identification of MECP2 mutations, and established centers at Baylor and UAB where he was principal investigator of the RTT and RTT-related disorders Natural History Study (NHS) that enrolled more than 1700 participants.  He has authored over 150 publications on RTT while continuing to seek effective treatment for this unique neurodevelopmental disorder.

Tim Benke, MD, PhD

                   

Tim Benke, Ponzio Family Chair in Neurology Research and Professor of Pediatrics, Pharmacology, Neurology and Otolaryngology at University of Colorado School of Medicine, completed MD/PhD (BCM), post-doctoral training (Bristol University) and clinical training (Pediatric Neurology, Texas Children’s).  He joined the University of Colorado and Children’s Hospital Colorado (CHCO) in 2002 where he is Research Director of the Neuroscience Institute.  He initiated the multi-disciplinary Rett Clinic in 2011 at CHCO, where he is the Medical Director.  Dr. Benke was site PI for the NIH funded Natural History Study and participates in clinical trials and outcome measure development in RTT and CDKL5.

Jeffrey Neul, MD, PhD

Jeffrey Neul, MD, PhD

                   

Dr. Jeffrey Neul is the Director of the Vanderbilt Kennedy Center and the Annette Shaffer Eskind Professor of Pediatrics at Vanderbilt University Medical Center. His clinical practice and research focus is on Rett syndrome and related disorders. His laboratory-based research explores disease mechanisms, tests new therapeutics, and discovers and evaluates biomarkers of disease improvement. His clinical research focuses on longitudinal natural history studies and the development of outcome measures and biomarkers. He has been involved in multiple industry sponsored clinical trials in Rett syndrome and is leading an investigator initiated study exploring the safety of oral ketamine in Rett syndrome.

Tim Feyma, MD

Tim Feyma, MD

                   

Dr. Feyma trained in Pediatrics at Penn State, Child Neurology at Seattle Children’s Hospital.  He moved to Minnesota in 2009 where he joined Gillette Children’s Specialty Healthcare, a nonprofit hospital founded in 1897 as the first hospital in the US specializing solely in the care for children’s with chronic health disabilities.  He is now the medical director of the Neurology department, head of the deep brain stimulator program, head of the Rett Syndrome clinic, and most importantly a front-line clinician.  Active research interests include rare genetic disease, orphan drugs for rare diseases, and cerebral palsy research.

Theresa Bartolotta, PhD, CCC-SLP

Theresa Bartolotta, PhD, CCC-SLP

                   

Monmouth University

Sasha Djukic, MD, PhD

Sasha Djukic, MD, PhD

                   

Sasha Djukic, MD, PhD is Professor of Neurology at Albert Einstein College of Medicine  and the Director of the Center for Rett Syndrome in the Children’s Hospital at Montefiore in the Bronx, New York, the only Rett clinic in the tri-state area. Dr. Djukic began her training at the University of Belgrade in Yugoslavia, obtaining both her medical and doctorate degree. She then moved to the Albert Einstein College of Medicine, where she completed her Pediatric Residency and Neurology Fellowship. 

She founded the Rett Center at Montefiore in 2008, which provides a comprehensive multidisciplinary care to 380 patients with Rett syndrome. Dr. Djukic has a special interest in neuropsychology and how those with Rett syndrome communicate and excel in their education. She was the first to implement effectively eyetracking technology as a method of cognitive assessment in patients with Rett syndrome and objective neurophysiological techniques to assess their language processing.  She was Principal investigator in five clinical trials in Rett syndrome. She has also published about clinical care and worked with other scientists to develop better understanding of Rett syndrome.

She was the founder of an international Blue Sky Girls event that raised awareness about Rett syndrome.

Kathleen Motil, MD, PhD

Kathleen Motil, MD, PhD

                   

Dr. Kathleen J. Motil is Professor of Pediatrics at the USDA/ARS Children’s Nutrition Research Center, Baylor College of Medicine, and practices pediatric gastroenterology at Texas Children’s Hospital, Houston.  Dr. Motil’s research has focused on gastrointestinal and nutritional issues in children with Rett syndrome.  She conducted studies on energy, protein, calcium, and vitamin D in Rett syndrome.  From the Natural History Study, she described the clinical spectrum of gastrointestinal dysfunction in Rett syndrome.  Most recently, Dr. Motil explored the role of the microbiome and metabolome on gastrointestinal function in Rett syndrome.  Dr. Motil published numerous papers in her field of expertise.

Robin Ryther, MD, PhD

Robin Ryther, MD, PhD

                   

Washington University in St Louis and St. Louis Children’s Hospital Rett Spectrum Clinic

Rocco Gogliotti, PhD

Rocco Gogliotti, PhD

                   

Loyola University Chicago

Art Beisang, MD

Art Beisang, MD

                   

Gillette Children’s Specialty Healthcare

Karen Erickson, PhD

Karen Erickson, PhD

                   

UNC School of Medicine, Center for Literacy and Disability Studies

David Koppenhaver, PhD

David Koppenhaver, PhD

                   

Appalachian State University

Kyle Fink, PhD

Kyle Fink, PhD

                   

University of California, Davis Medical Center

Meir Lotan, PT, PhD

Meir Lotan, PT, PhD

                   

Professor Meir Lotan is a physical therapist, researcher, teaching at Ariel University, Israel. He is affiliated with the Israeli National Rett Syndrome evaluation team working as a clinician and consultant for the past 30 years. Research projects conducted by him over the years, intend to improve care and therapeutic interventions for individuals with Rett syndrome. He has lectured and consulted about Rett syndrome in many countries, overall evaluating over 600 individuals with Rett syndrome across the globe. His present research interventions focus on remote rehabilitation, and scoliosis intervention for our Silent Angels.   

Bernard Suter, MD

Bernard Suter, MD

                   

Baylor College of Medicine

Keerthi Krishnan, PhD

Keerthi Krishnan, PhD

                   

The University of Tennessee, Knoxville

Aloysia Leisanne Schwabe, MD

Aloysia Leisanne Schwabe, MD

                   

Texas Children’s Hospital

Jane Lane, RN, BSN

Jane Lane, RN, BSN

                   

University of Alabama at Birmingham

Lisa Lightner

Lisa Lightner

                   

Lisa Lightner is a Special Education Advocate and Lobbyist who lives in suburban Philadelphia. She currently serves on the Advisory Committees for the Epilepsy Foundation and PA Education Voters. In addition to helping individual families, she offers online assistance and IEP training.

Kacy Seitz, CLTC, ChSNC

Kacy Seitz, CLTC, ChSNC

                   

Financial Advisor & Special Needs Planning Specialist, Northwestern Mutual

Special needs parent and mom to Hudsyn, her daughter who has complex medical needs, Kacy is a financial advisor in Kansas City. After six years in the financial services industry, she opened her practice with Northwestern Mutual in 2013 because she had difficulty finding good, sound advice from a variety of financial advisors who could help her develop a solid plan for her daughter. Her purpose in life is to awaken understanding and help others become empathetically aware of people with disabilities. She focuses on helping special needs families with proper financial planning throughout their lifetimes. Her book, “Every Now & Then, I Fall Apart: A Mother’s Memoir of Life After a Traumatic Birth” is scheduled to be published in 2021.

Her husband, Dan, is a stay-at-home dad who cares for their two children and has a successful YouTube channel documenting the daily life of a special needs dad, called “See The Seitz.”

Whether a family has substantial means or a few assets, it is critical to take time to develop and implement a special needs plan. There are unique circumstances along with many decisions to be made that can have a profound impact on a child’s quality of life while caregivers are living, and after they’re gone. A proper special needs plan can help avoid common mistakes and oversights that could jeopardize the lifetime support of a person with disabilities.

Kacy leads a Northwestern Mutual study group of over 100 advisors in 31 states that focus on learning, professional development and building skills during monthly calls to better serve the special needs communities
across the country.

  • Her boutique practice serves over 500 special needs families in 27 states.
  • Chartered Special Needs Consultant (ChSNC)
  • Certified Long-Term Care Specialist (CLTC)
  • Kansas Governor appointed parent advocate for the Kansas Developmental Disabilities Council and the Advisory Commission for Children with Special Health Care Needs
  • Children’s Mercy Hospital Family Advisory Board member, Beacon Complex Care Clinic Patient & Family Advisory Board Chair, and a variety of other parent mentor positions held since 2014. She was named the hospital’s volunteer of the month for December 2020.
  • Regular presenter and speaker for: Kansas City Special Needs Ministry Network, Archdiocese of Kansas and Missouri, National Center on Deaf-Blindness & the Children’s Center for the Visually Impaired
Jessica Nickrand, PhD

Jessica Nickrand, PhD

                   

Child Neurology Foundation

Dr. Margarita Saenz

Dr. Margarita Saenz

                   

Dr. Margarita Saenz is a practicing clinical geneticist who specializes in pediatric neurogenetics. She sees patients with intractable epilepsy, brain malformations, Rett syndrome and neurodegenerative conditions to name a few. She found being a genetic physician a perfect career choice for her because it allowed her to consolidate her love of academics, children, and helping those with special needs. Her personal experience having a sister with a genetic condition has helped her understand how genetic conditions impact every aspect of an individuals and their family’s life.  She is dedicated to the education, recruitment, and retention of underrepresented backgrounds in medicine.

Steve Skinner, MD

Steve Skinner, MD

                   

Steve Skinner, MD, is the Director of the Greenwood Genetic Center, an IRSF Rett Syndrome Center of Excellence. He is a board-certified clinical geneticist involved in the evaluation and treatment of children and adults with birth defects, intellectual disabilities, and other genetic disorders. His areas of interest include Rett syndrome, Angelman syndrome, autism, and intellectual disabilities. He was a principal investigator on the NIH/Rare Diseases Clinical Research Network’s Rett Syndrome Natural History Study and is involved in numerous clinical trials for patients with Rett syndrome.


 

AGENDA

ASCEND 2022 Rett Syndrome National Summit is Wednesday, April 27 through Saturday, April 30

Check-in Begins – Wednesday, 4/27, at 12 p.m.
Evening Mingling Reception – Wednesday, 4/27
Welcome & Kick-off – Thursday, 4/28 at 8 a.m.
Last Session Ends – Saturday, 4/30 at 11 a.m.

As a Rett community, it’s rare to connect in person with other Rett families. And if you don’t live near a Rett clinic, often, your access to specialized advice can be limited.

This Summit will close that gap.

We’re designing the Summit agenda so you’ll be able to spend time with Rett families, hear from Rett doctors and researchers, and learn about the latest technology and therapies that can help bring some ease into your daily life.

Stay tuned for more details!


 

REGISTRATION

Individual registration gets you access to our keynote speaker Chris Ulmer of Special Books for Special Kids, all the main sessions with Rett experts, special activities designed to connect our community, and our ASCEND event app filled with information, updates, and a place to connect with other families! Registration also includes breakfast and lunch!

ASCEND is designed for adult caregivers. Loved ones with Rett syndrome and children are welcome, but the Summit experience may not be well-suited for them. We hope to make Rett syndrome respite care available for an additional fee.

Event Waiver | Cancellation Policy | Covid-19 Policy


 

ACCOMMODATIONS

Gaylord Opryland Hotel & Convention Center has limited rooms available under IRSF’s room block. Please consider booking at one of the nearby hotels or check back often.

CHECK OUT HOTEL ACCOMMODATIONS

Gaylord Opryland


 

SPONSORS & Exhibitors

If you’re interested in learning about sponsorship & exhibitor opportunities, contact Andrea Reed at [email protected].


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The International Rett Syndrome Foundation (IRSF) is looking for a passionate storyteller and marketer to advance our mission of accelerating research and empowering families affected by Rett syndrome.

 

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