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
20
Sat
Golf Fore A Cure @ Cleveland Heights Golf Course
Apr 20 @ 7:00 am – 4:00 pm
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
13
Mon
10th Annual Ella Foard Foundation For Rett Syndrome Charity Golf Classic @ Providence Country Club
May 13 all-day
10th Annual Ella Foard Foundation For Rett Syndrome Charity Golf Classic
May
18
Sat
Sesame Place Dinner & Park @ Sesame Place
May 18 – May 19 all-day
Sesame Place Dinner & Park @ Sesame Place

Enjoy an accessible family friendly park for 2 days with a private dinner on Saturday. Tickets are $50/person; this is at least a $70 savings! Plan your Accessible Seasame Place Day!

Dinner:

Date: Saturday, May 18 Time: 6:00 - 7:00 pm Where: Abby's Garden Grille After 5:30 pm parking is free Tickets must be pre-purchased by Wednesday, May 8th 2019 and are non-refundable. Tickets include: Private after-hours dinner with a Sesame character appearance, and 2-day park passes to be used on Saturday, May 18th and Sunday, May 19th. The park is less than a mile away from the Rett Ed Day at Sheraton Bucks County. Parking at Sesame Place is $27 or $23 based on the lot. The Sheraton offers free parking and free non-ADA shuttle. For more information contact Paige Nues [email protected] or with questions to Erin Cassano (local Rett parent) [email protected]  
May
21
Tue
14th Annual Samantha Corpus Golf Tournament @ Blackhawk Country Club
May 21 all-day
Other event contact: John Corpus - [email protected]
Jun
4
Tue
7th Annual Charamella Golf Tournament @ Westover Country Club
Jun 4 @ 11:00 am – 5:00 pm
Mark was a devoted husband, father and friend that touched many lives through his enthusiasm and love of life. Every job, school, team or organization that he was involved with became a part of him. He had a great ability to connect with people and shared his passion for life with everyone that he met. As a father of a daughter with Rett syndrome, Mark did everything he could to make her life better. It is in his honor that we gather his family and friends to celebrate a life well lead and to give to a cause that was close to Mark’s heart. 11:00 AM - 12:00PM Golf Registration & Lunch 12:30 PM Shotgun Start 5:00 PM Doors Open for Dinner * Lunch, 18 Holes of Golf, Driving Range, Tournament T-shirt, Dinner, Prizes, Raffle Table, Silent Auction

Sign up as a foursome or individual

PLAY GOLF All sponsors will need to provide company logo/artwork via email to Deb McLaughlin [email protected]. All payments and artwork due April 19, 2019. DINNER & SPONSORSHIP
If you can't attend the event you can still make a general donation. DONATE
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
Jun
28
Fri
Rip it for Rett
Jun 28 @ 7:00 am – 4:00 pm
Join us for a great time supporting a great cause, we hope to see you on June 28, 2019! The Rip it for Rett, hockey themed golf tournament is a blast, a great round of golf on a great course with really awesome people.
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
Nov
12
Tue
RettEd: Orthopedics: A Focus on Scoliosis and Hips
Nov 12 @ 1:00 pm
Please join us as we speak to an orthopedic expert in neuromuscular scoliosis and developmental hip dysplasia. We will discuss how and when these typically occur in Rett syndrome, and what we can do about it. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today