SPEAKERS | AGENDA | ACCOMMODATIONS | Sponsors | FAQs

 

WE ARE SOLD OUT!

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


 

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 discovery 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.

Art Beisang, MD

Art Beisang, MD

                   

Arthur (Art) Beisang, MD has been a practicing pediatrician for 30 years. He has focused exclusively on Complex Care Pediatrics since moving to Gillette Children’s Specialty Health Care in 2006. He was a founder of the Rett and Rett-Related Disorders Clinic at Gillette. He is currently the Clinic’s Co-Director and also Co-director of the Aerodigestive Clinic. His clinical goal is to maintain the health of his neurologically complex patients, including managing all aspects of feeding, diagnosing distressing symptoms (including dysautonomia), and managing aspiration and drooling.  

Tim Benke, MD, PhD

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.

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 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 effectively implement eye-tracking technology as a method of cognitive assessment in patients with Rett syndrome and objective neurophysiological techniques to assess their language processing. She was the principal investigator in five clinical trials in Rett syndrome, has published about clinical care, and worked with other scientists to develop a better understanding of Rett syndrome.

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

Tim Feyma, MD

Tim Feyma, MD

                   

Dr. Feyma trained in Pediatrics at Penn State and 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 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.  Dr. Feyma’s active research interests include rare genetic disease, orphan drugs for rare diseases, and cerebral palsy research.

David Lieberman, MD, PhD

David Lieberman, MD, PhD

                   

David Lieberman, MD, PhD, is a child neurologist at Boston Children’s Hospital. Dr. Lieberman completed his medical and doctorate degrees in Neuroscience at Stanford University School of Medicine. He continued his training at Johns Hopkins University School of Medicine, completing an internship in Pediatrics and a residency in Pediatric Neurology. Dr. Lieberman remained at Johns Hopkins as faculty for a few years before moving back to the west coast to take a faculty position in the Neurosciences Department at UC San Diego. Dr. Lieberman moved to Boston in 2015 and now serves as the Director of the Comprehensive Rett Syndrome Program at Boston Children’s Hospital where he follows more than 200 patients with Rett syndrome and Rett-related disorders.

Eric Marsh, MD, PhD

Eric Marsh, MD, PhD

                   

Dr. Marsh received his MD from New York University School of Medicine and his PhD in physiology and neuroscience from NYU Sackler School of Biomedical Sciences. After completing his internship and pediatric residency at NYU, he moved to CHOP for a residency in child neurology where he stayed for his fellowship in clinical neurophysiology and completed his post-doctoral fellowship. Hired first as faculty there in neurology and pediatrics, Dr. Marsh is now an associate professor of neurology at the University of Pennsylvania Perelman School of Medicine and CHOP, Clinical Director of the Penn Orphan Disease Center, and Director of the CHOP Rett and Related Disorders Clinic. 

Dr. Marsh has particular clinical interests in developmental epilepsies, neurodevelopmental disorders, and cortical malformations.  His research has focused strongly on the impact of intraneuronal development and altered excitability on epilepsy, analyzing intracranial EEG recordings to better localize the epileptic zone and network, and performing natural history and electrophysiological biomarker studies.  He has also been involved in a number of clinical trials for children with the DEEs, including Dravet, LGS, and Rett syndrome.

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.

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.

Sarika Peters, PhD

Sarika Peters, PhD

                   

Dr. Peters is a psychologist who has extensive experience in the detailed behavioral and neurophysiological characterization of neurogenetic disorders, including the creation of new methods of assessment for these conditions. She earned her Ph.D. from the University of Texas at Austin and then completed a Leadership Education in Neurodevelopmental Disabilities training fellowship at the University of Tennessee Health Sciences Center. Dr. Peters conducts clinical research in Rett syndrome and MECP2 duplication syndrome. She uses novel methods of assessment inclusive of wearable devices and event-related potentials to track clinical severity and is conducting validation studies of remote/at-home assessment. She has also examined immune and stress biomarkers of disease severity and has been part of clinical trials and outcome measure development.

Robin Ryther, MD, PhD

Robin Ryther, MD, PhD

                   

Robin Ryther is an Associate Professor of Neurology and Director of the Rett Spectrum ClinicBorn and raised in the Saint Louis area she received her undergraduate degree from the University of Missouri – Columbia before completing her MD and PhD at Vanderbilt University School of Medicine in Nashville, TN.  Following medical school, Dr. Ryther completed her pediatric and neurology residency at Massachusetts General Hospital as part of the Harvard Combined ProgramWhile there she developed an interest in epilepsy and returned to the Saint Louis Area to complete her neurophysiology and pediatric epilepsy fellowship at Washington University School of MedicineShe stayed at WUSM as faculty in 2013 and worked to create the Rett Spectrum Clinic which opened in 2015Dr. Ryther sees pediatric epilepsy patients and both children and adults with Rett Spectrum Disorders.

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.

Bernhard Suter, MD

Bernhard Suter, MD

                   

Dr. Suter is Assistant Professor at Baylor College of Medicine and Co-Director of the Blue Bird Rett Center. He is American Board of Psychiatry and Neurology certified in Neurology and Epilepsy and also has a strong interest in movement and gait analysis. He has published several papers on gait in Rett syndrome. Beyond that, he has participated in many clinical trials for Rett syndrome over the last decade. He went to medical school in his home country of Germany, after which he became a post-doctoral fellow in the Developmental Neurobiology Laboratory at Massachusetts General Hospital and Harvard Medical School and then completed residency training in Pediatrics and Pediatric Neurology at Texas Children’s Hospital. 

View All Speakers


 

AGENDA

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

Check-in Begins – Wednesday, 4/27 at 3 p.m.
Evening Welcome Reception – Wednesday, 4/27 at 5 p.m.
Welcome & Kick-off – Thursday, 4/28 at 8 a.m.
Last Session Ends – Saturday, 4/30 at 12 p.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’ve designed 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.

View the FULL Agenda

Click here to download a PDF version


 

REGISTRATION

WE ARE SOLD OUT!

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 sessions are designed for adult caregivers. Loved ones with Rett syndrome and children are welcome at Summit evening social events provided they meet IRSF’s Covid protocol, but the overall Summit experience may not be well-suited for them. Please make a caregiver plan for your child(ren) during sessions so that you and other participants can benefit from our speakers.

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

Presenting Sponsor:

Taysha Gene Therapy

Platinum Sponsors:

Acadia Logo - Platinum Sponsor

 

Gold Sponsors:

IMC Logo

 

Silver Sponsors:

hive networks
Novartis Pharmaceuticals

 

Bronze Sponsors:

prc-saltillo

Tobii Dynavox Logo

 

Sponsorship Opportunities


CONTACT US WITH QUESTIONS

Back To Top