Thank you all for coming!
The first Rett Clinic Family Symposium was held on October 1, 2016. The event was organized by the Rett Clinic at the Children’s Hospital Colorado and sponsored by Rocky Mountain Rett Association. Eight clinic specialists and guest speakers were on site to discuss a range of topics for families, who have a child with Rett, CDKL5, MECP2 Duplication and FOXG1. Eighty people attended the event.
The first speaker was Dr. Tim Benke, Rett Clinic and Research Director of the Neuroscience Institute at the Children’s Hospital in Denver. He introduced the Rett Clinic and talked about current studies and progress in research. Meghan Shank, Augmentative and Alternative Communication Team Lead and Speech-Language Pathologist gave an in-depth look at communication and the tools available to Rett girls.
Dr. Scott Demarest from the Neuroscience Institute offered insights into different types of seizures and their treatments. Dr. Eliza Buyers from the Pediatric and Adolescent Gynecology at the Children’s Hospital in Denver talked about gynecologic considerations in all girls and for Rett patients.
Margaret Spring from the Occupational Therapy Department at the Children’s Hospital spoke about the importance of setting goals and achieving function for Rett patients. She was followed by Dr. Anne Stratton from the Rehabilitation Medicine Department, who discussed movement disorders. Susie Germany from Germany Law Firm and Megan Brand, Executive Director of Colorado Fund for People with Disability, focused on the legal and financial planning of having an aging disabled child/adult.
Overall the 1st Rett Symposium was a big success with eighty families participating. They did not only get insight into research and treatment options, but they also had the chance to connect with multiple family support groups as well as vendors. The RMRA hopes that each family walked away with valuable knowledge on things affecting their child, as well as some new tools to help manage and plan for their child’s day-to-day care. All presentations are available in the links below for your convenience.
We hope you can join us for the next Rett Clinic Family Symposium. If you have any feedback on this symposium or if you have an idea what we should feature next year, please email Tristen Dinkel at RettClinic@childrenscolorado.org.
Thank you to our speakers:
Tim Benke, MD, PhD, Medical Director, Rett Clinic and Research Director, Neuroscience Institute:
Meghan Shank, M.E.d., CCC-SLP, Augmentative and Alternative Communication Team Lead, Speech-Language Pathologist:
Scott Demarest, MD, Neuroscience Institute:
Eliza Buyers, MD, FACOG, Pediatric and Adolescent Gynecology, Children’s Hospital Colorado:
Margaret Spring MS OTR/L, Occupational Therapy Department:
Anne Stratton, MD, Rehabilitation Medicine Department:
Susie Germany, Esq., Elder Law and Probate Attorney and Megan Brand, Executive Director of Colorado Fund for People with Disabilities: