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
Apr
12
Fri
Rett Spectrum 2nd Annual Family Education Symposium
Apr 12 all-day
Apr
27
Sat
Midwest Rett Syndrome Foundation Education Day
Apr 27 all-day
Hosted with Gillette Children’s Specialty Healthcare Rett Syndrome Services Clinic - St. Paul, MN (Regional Association Partner)
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
May
18
Sat
Philadelphia Ed Day
May 18 all-day
Jun
22
Sat
Rettsyndrome.org Boston Ed Day
Jun 22 all-day
Rettsyndrome.org Ed Day hosted by TBD – Boston, MA
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
Jul
20
Sat
Rettsyndrome.org Bay Area Ed Day @ Camp Arroyo
Jul 20 all-day

Hosted by UCSF Benioff Children’s Hospitals Katie’s Clinic for Rett and Related Disorders, a Rettsyndrome.org Clinical Research Center of Excellence

Intended for anyone wanting to connect on issues important to Rett syndrome families, especially clinical trial information and emphasis on the enriched environment. Attendees will enjoy a fun camp-style day of discussion and “living education” activities that will cover: research updates, medical and therapeutic interventions, and communication strategies.

WHEN | Saturday, July 20, 2019

WHERE | Camp Arroyo, 5555 Arroyo Road, Livermore, CA 94550

TIME | 9:00a.m. - 4:00p.m. (please arrive at 8:30a.m.)

Fee: $10/per person. Diagnosed children are FREE.

Includes: Presentations, hands-on activities and demonstrations, interactive panel discussion, continental breakfast and lunch. We will have an onsite photographer for family portraits for RSO awareness and education materials. If you choose to participate, photos will be shared with you at no charge. REGISTER NOW!