Past Symposia

2014 Rett Syndrome Symposium

June 24-26, 2014




Welcome!  On behalf of and our Session Chairs: Pamela Diener, David Katz, Sacha Nelson, and Alan Percy, it is our pleasure to invite you to join us for the 13th Rett Syndrome Symposium, an international, interdisciplinary meeting focused on recent advances in Rett syndrome research.  This conference - “Opening Doors to Discoveries” - will include the sessions on Basic, Translational, Clinical and Neuro-Abilitation Research that will address the molecular, cellular and systems-level pathophysiology of Rett syndrome, potential treatment strategies and ongoing clinical trials.

We’re very excited to put together a program of outstanding basic and clinical scientists working on Rett syndrome and related fields of neurological research.  We invite you to participate in this very important meeting aimed to advance our understanding of the pathogenesis of Rett syndrome and bring forth discussion for developing new therapeutic strategies for this disease. 

There will be Poster session on the evening of Wednesday, June 25th.  If you’re interested in presenting your work, please register and  submit an abstract by May 10, 2014Click here for instructions.

The meeting is sponsored by and will take place June 24-26, 2014 at the Westfields Marriott Washington Dulles in Chantilly, VA.  This year the 30th Annual Family conference will follow the Research Symposium from June 26th through June 28th.

Target Audience:

  • Academic and industry scientists and clinicians engaged in basic and drug discovery research for Rett syndrome and related fields of neurological research and other disorders
  • Business development and licensing professionals
  • Allied health care professionals
  • Young investigators and graduate students

Note: The International Foundation for CDKL5 Research will host an all-day scientific conference on Tuesday June 24th., prior to the opening of the Rett Syndrome Symposium.  Please check their website for upcoming information.


Janice Ascano, PhD
    Manager of Grants & Research
    International Rett Syndrome Foundation

The World Congress is the largest international meeting focused exclusively on Rett Syndrome. The meeting, which takes place every four years, brings together the luminaries in the field of Rett syndrome research together with clinicians, families and a host of advocacy groups, dignitaries and other observers with an interest in learning more about the disease. At the 6th World Congress on Rett Syndrome in October 2008, it was publicly announced that IRSF would be the lead organizer and host of the following (7th) World Congress meeting in 2012.

The conference took place on June 22nd - June 26th, 2012, and will be hosted in New Orleans, LA, - chosen due to the city’s historical and cultural links with France, where the previous conference took place. The conference serves two main audiences: the families of people living with the disease and researchers seeking to find treatments and a cure or simply learn more about this disease. The attending families are offered a forum for discussing the daily issues they face with medical and service professionals, while the principal scientists working in the field are given a platform for information exchange and scientific discourse. The next World Congress meeting will bring together luminaries in the field of Rett syndrome research together with families, IRSF staff and a host of other colleagues and professionals.

The scientific Chairs of the conference will be Huda Y. Zoghbi, M.D. (Baylor College of Medicine) and Gail Mandel, Ph.D. of (Vollum Institute, Oregon Health & Science University) who are working in conjunction with IRSF Research staff to identify themes, speakers and session Chairs. Both Chairs and staff are confident that the agenda will reflect a comprehensive list of individuals whose participation in this meeting will provide a significant contribution towards IRSF’s goal of advancing our knowledge of the underlying causes of Rett syndrome and developing new therapeutic strategies for the disease.

"We are thrilled to organize the 7th World Congress on Rett Syndrome in 2012. As we put together the program we are excited about engaging investigators that come from diverse fields, use a variety of new approaches to enhance our understanding of Rett pathogenesis, and are identifying potential paths for interventions. We are bringing together faculty with different expertise who will present data on new discoveries relevant to Rett including suppressor screens, new knock in mouse models, timing of MeCP2 function, potential roles for non-neural cells (e.g. glia), new electrophysiological studies examining neural circuits in Rett models, to name a few. We are anticipating discussions that will broaden the thinking in the field and will open up new and different directions in research on Rett and related disorders." - Huda Y. Zoghbi, M.D. and Gail Mandel, Ph.D.

IRSF's 12th Annual Rett Syndrome Symposium - Sunday, June 26th - Tuesday, June 28th 2011 in Leesburg, Virginia

The International Rett Syndrome Foundation hosted an exceptional 12th Annual Rett Syndrome Symposium from June 26th through June 28th, 2011 at the Lansdowne Resort in Leesburg, Virginia. The goal of the symposium was for researchers to share results of their latest research projects among peers and widen the knowledge base of Rett syndrome science. As a lay person, I was fortunate to hear very compelling Rett syndrome research presentations among which there were many. The quality of the participants was outstanding; every session, from morning till late into the evening was at full attendance. There are very dedicated, committed people working on Rett syndrome and I wish every member of the community could have seen this. There are young, new scientists being nurtured and mentored in the field by some of the most accomplished Rett syndrome scientists. Their protégés are smart; eager and full of energy and ambition to succeed in reversing Rett syndrome. Our thanks and gratitude goes out to this year’s symposium co chairs: Dr. Yi Eve Sun, PhD, UCLA, and Dr. James H. Eubanks, PhD, Toronto Western Research Institute. They did a superb job organizing the program and selecting the presenters. Dr. Alan Percy, MD, UAB, a highly recognized authority on Rett syndrome known to many of you and Dr. Thomas Südhof, Stanford University, whose research interests focus on understanding the molecular mechanisms contributing to neurological disorders, gave the Keynote addresses at the symposium. A record-breaking 135 members of the scientific and medical community from the US, Germany, UK, Canada, Israel, Australia, Italy, Japan, Singapore, and Ireland participated to discuss the latest advancements in Rett syndrome and MECP2 gene research and therapeutic strategies.

IRSF takes great pride in reporting that this year’s event was attended by a long list of distinguished guests from NIH and the field of Autism Spectrum Disorders. These experts engaged in highly stimulating discussions on the regulation and function of the MeCP2 protein, the neurobiology and pathophysiology of Rett syndrome, the status of animal and human models of Rett syndrome, as well as therapeutic strategies and treatment of RTT. The remarkably talented individuals presenting at this year’s symposium, many of who embarked on their research careers with IRSF grants and fellowships, reported significant progress in their work. A wide array of research was presented at this year’s symposium, and all of the conference talks and poster sessions were attended at full capacity from early morning until late evening.

The notable and novel topics discussed at this year’s symposium were:

  • Use of stem cells to study Rett syndrome mechanisms and treatments (Qiang Chang, Wisconsin; Jim Ellis, Toronto; Alysson Muotri, UCSD; Alesa Renieri, Siena; Yi Sun, UCLA)
  • Use of histone deacetylase (HDAC) inhibitors as potential therapeutic agents for treating Rett syndrome (John Christodoulou, Westmead; James Eubanks, Toronto; Alan Kozikowski, Illinois; Yi Sun, UCLA)
  • Genetic components that contribute to the pathogenesis of multiple Autism Spectrum Disorders (ASDs) other than Rett syndrome (Maja Bucan, Pennsylvania; Mark Daly, Harvard; James Suttcliff, Vanderbilt)
  • Role of glia (neuronal support cells) in the progression of Rett syndrome (Daniel Lioy, OHSU)
  • Role of MeCP2 protein needed in adult neuron function (Helene Cheval, Edinburgh; Christopher McGraw, Baylor)
  • IGF-1 clinical trials in Italy (Daniela Tropea, Trinity)
  • Identification of genes that can modify Rett syndrome symptoms (Monica Justice, Baylor)

The meeting was underwritten for IRSF mainly through the Pepsi Refresh Project which was won in October 2010 through the sheer community voting power of families, friends, and researchers interested in reversing the symptoms of Rett syndrome. We also thank partial sponsors such as Optronics, Pfizer, PsychoGenics and the International Foundation for CDKL5 Research

We left the symposium invigorated, encouraged and reassured; Rett syndrome research is moving ahead. We look forward with anticipation to the high-quality Letters of Intent being received now through August 15th for IRSF’s next round of Basic and Translational Research grant applications and review.

Past Symposiums

11th Annual RTT Symposium

11th Annual Rett syndrome Symposium Summary 11th Annual Rett syndrome Symposium Summary 475.32 Kb

IRSF 11th Annual Rett syndrome Symposium Agenda IRSF 11th Annual Rett syndrome Symposium Agenda 111.14 Kb

The International Rett Syndrome Foundation (IRSF) will host the 11th Annual Rett Syndrome Symposium from June 27th through June 29th 2010 at the Landsdowne Resort and Spa, Leesburg, Virginia. This year the symposium will be chaired by David Katz, Ph.D. (Case Western Reserve University, School of Medicine) and Dr. Yi Eve Sun, M.D., Ph.D. (University of California – Los Angeles). This year’s meeting will be opened by pre-eminent RTT researcher, Huda Zoghbi M.D. (Baylor College of Medicine) who will deliver the meeting’s keynote address.

The 2010 symposium presents some novel features, including a new session on Autism Spectrum Disorders (ASDs) other than RTT, which will provide researchers an opportunity to discuss similarities and differences in the pathogenesis and phenotypic characteristics of multiple ASDs, as well as an expanded session on recent advances in therapeutics for RTT symptom treatment and reversal. This year’s meeting will also feature sessions on the regulation and function of MeCP2 as well as new advances in our understanding of RTT pathophysiology from mouse models. Presentations will cover a broad range of topical issues including regulation of MeCP2 function by activity dependent phosphorylation, genetic reversal of neuronal pathophysiology in mice, PTEN/mTOR signaling in neurodevelopmental disorders and iPS cells from autism spectrum disorder patients. Finally, please note the new location of the meeting, in close proximity to Washington, D.C.

As in the past, IRSF has invited session chairs who represent a broad spectrum of expertise, including basic molecular sciences, diverse neuroscience disciplines and drug discovery and development for neurologic disorders.

Confirmed participants include: Huda Y. Zoghbi (Baylor College of Medicine), Yi Eve Sun (University of California – Los Angeles), David M. Katz (Case Western Reserve University, School of Medicine), Nathalie G. Bérubé (University of Ontario), Sonia Cohen (Harvard University), Yijun Ruan (Genome Institute of Singapore), Dietmar Spengler (Max-Planck Institute of Psychiatry), Juliette Nectoux (Université Paris Descartes, Institut Cochin, INSERM)), Morteza Yazdani (University of Basel), James H. Eubanks (University Health Network, Toronto Western Research Institute), Alicia Degano (CIQUIBIC-CONICET, Universidad Nacional de Córdoba, Argentina & John’s Hopkins University, School of Medicine), Lisa Monteggia (University of Texas Southwestern Medical Center – Dallas), Stewart Cobb (University of Glasgow), Jin-Hyung Lee (University of California – Los Angeles), Emanuel DiCicco-Bloom (University of Medicine & Dentistry of New Jersey, Robert Wood Johnson Medical School), Luis F. Parada (University of Texas Southwestern Medical Center – Dallas), Jacqueline N. Crawley ( National Institute of Mental Health), Ashley A. Van Zeeland (Scripps Translational Science Institute), Larry J. Young (Emory University), John McCall (PharMac, LLC), Alan P. Kozikowski (University of Illinois – Chicago), Frank M. Longo (Stanford University), Carolyn Schanen (A.I. DuPont Hospital for Children, Nemours Children’s Clinic at the University of Delaware), Stavros Lomvardas (University of California – San Francisco), Aaron Cheung (University of Toronto).

10th Annual RTT Symposium

IRSF will host the 10th Annual Rett Syndrome Symposium from June 28th through June 30th 2009 at Eaglewood Resort in Chicago. The symposium chairs are David Katz (Case Western School of Medicine) and Monica Justice (Baylor College of Medicine), two scientists who are making important contributions to the field of Rett Syndrome research. 

The meeting will open with a keynote address by distinguished neuroscientist Carla Shatz (Stanford University) who will discuss how interactions between neural activity and newly discovered neuronal genes shape and fine-tune brain circuit formation.

The meeting will address a range of topics that are the focus of intense efforts in the field of Rett Syndrome research, including the role(s) of MeCP2 in gene regulation, the pathophysiological consequences of MeCP2 mutation in mouse models of Rett Syndrome, phenotypic variability and genetic modifiers of disease and recent advances in development of potential treatment strategies.

Presentations will also include speakers from outside the field who will discuss issues relevant to the study of Rett syndrome, such as the influence of genetic background on disease phenotype and the opportunities and limitations of using mice to model human disease. Confirmed participants include Huda Zoghbi (Baylor College of Medicine), Yves Barde (University of Basel), Gail Mandel (Vollum Institute), Yi Sun (UCLA), Nino Ramirez (Seattle Children’s Hospital), Joe Nadeau (Case Western School of Medicine), Richard Paylor (Baylor College of Medicine), Mriganka Sur (MIT) and John McCall (PharMac, LLC).

Click here for the agenda.