Events

Jan
8
Tue
Newer Parents: Recommendations for a Healthier Start to Your Unexpected Journey
Jan 8 @ 1:00 pm – 2:30 pm
Topic: Newer Parents: Recommendations for a Healthier Start to Your Unexpected Journey Speaker: Tristen Dinkel, RN, DCH, Paige Nues, Sam Brant Click to View Recording
Feb
12
Tue
Rett Syndrome Research Outlook: 2019 & Beyond
Feb 12 @ 1:00 pm – 2:30 pm
Topic: Rett Syndrome Research Outlook: 2019 & Beyond Speaker: Steve Kaminsky, PhD Click to View Recording
Mar
12
Tue
A Good Night’s Sleep To All
Mar 12 @ 1:00 pm – 2:30 pm
Topic: A Good Night’s Sleep To All Speaker: Dr. Daniel Glaze, TCH, BCM Click to View Recording
Apr
8
Mon
IEP Strategies for Successful Inclusion
Apr 8 @ 1:00 pm – 2:30 pm
Topic: IEP Strategies for Successful Inclusion Speaker: Mickie McCool and Katie Busch Click to View Recording
May
11
Sat
Adulthood: Living and Lifestyle Options
May 11 @ 1:00 pm – 2:30 pm
Speakers: Jenny Downs, PhD, Michelle Stahlhut, PT, PhD, Theresa Bartolotta, PhD, Donna Witzleben Special Day/Time : Saturday, 11:00 AM EST Register
Jun
11
Tue
Nutrition Strategies for Rett Syndrome
Jun 11 @ 1:00 pm – 2:30 pm
Topic: Nutrition Strategies for Rett Syndrome Speaker: Suzanne Geerts, MS, RD, LD UAB Register
Jul
9
Tue
Genetics of Rett Syndrome and MECP2
Jul 9 @ 1:00 pm – 2:30 pm
Topic: Genetics of Rett Syndrome and the MECP2 Gene Speakers: Steve Skinner, MD and Hannah Warren, LMSW Register
Sep
10
Tue
RettEd: 2019 Research Update 20 Years Since the MECP2 Gene Discovery feat. Huda Y. Zoghbi, M.D.
Sep 10 @ 1:00 pm
Please join us Tuesday, September 10th at 1:00 pm eastern with Huda Y. Zoghbi, M.D., Director, Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital; Baylor College of Medicine as we journey from discovery of the Rett syndrome disease-causing MECP2 gene to where that discovery and subsequent learnings have taken us to today. This live webinar is intended to provide hope and inspiration to caregivers and families. Our goal is to help you frame our collective Hope for better treatments and ultimately a cure for Rett syndrome while empowering you with strategies in the here and now. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Visit www.rettsyndrome.org/RettEd for additional 2019 webinar topics, and to access recording links from past webinars and associated QA documents. RettEd is a monthly series featuring expert Speakers on Rett-related research and care topics, hosted by Rettsyndrome.org, to help pave your personal pathway to empowerment Registration & Information
Oct
15
Tue
RettEd: Newly Published Communication Guidelines for Rett
Oct 15 @ 1:00 pm

Newly Published Communication Guidelines for Rett

Tuesday, October 15, 2019 1:00pm Webinar Please join us as Gill Townend, CertMRCSLT, M.Phil., B.Med.Sci.(Speech), Researcher and Augmentative & Alternative Communication Expert, Rett Expertise Centre Netherlands and Theresa Bartolotta, Ph.D., CCC-SLP, Professor, Department of Speech-Language Pathology, School of Education, Monmouth University, Monmouth University Graduate Center who will be introducing the development, final statement and recommendations of the largest body of evidence-based Communication guidelines to be published for Rett syndrome, work that was funded by Rettsyndrome.org and accomplished by a global team of experts. Our presenters will also be sharing the accessible, user-friendly handbook version of the guidelines with recommendations of how to embed these at home, in the classroom, and in day programs. Our goal is to help empower you with strategies in the here and now while we accelerate work towards our collective hope for better treatments and ultimately a cure for Rett syndrome. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Registration & Information