Events

Apr
20
Sat
Golf Fore A Cure
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
May 13 all-day

10th Annual Ella Foard Foundation For Rett Syndrome
Charity Golf Classic

May
18
Sat
Sesame Place Dinner & Park
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 pnues@rettsyndrome.org or with questions to Erin Cassano (local Rett parent) erin.cassano@gmail.com

 

May
21
Tue
14th Annual Samantha Corpus Golf Tournament
May 21 all-day

Other event contact: John Corpus – jdcorpus5@gmail.com

Jun
4
Tue
7th Annual Charamella Golf Tournament
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 markgolfrett@gmail.com.
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