Events

Jun
15
Sat
Siera’s Scramble
Jun 15 all-day
Charmed by Charity
Jun 15 @ 1:37 am – 2:37 am
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
28
Sun
Scramble for a Cure
Jul 28 all-day
Aug
8
Thu
Casting 4 A Cure
Aug 8 @ 9:00 am

Casting 4 A Cure is a loose band of compadres and compatriots who fly fish and fundraise to find a cure for Rett Syndrome. We have pulled together many of the fly fishing industry’s leaders and they have taken on the cause like it is their own. Come join us at one of the events or become a sponsor and help the thousands of girls affected by this crippling neurological disorder.

3 day single entry – $2,500.00
3 day team entry – $5,000.00

Location:
10 Warm Creek Ln.
Victor, ID 8345

Registration & Information

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

Sep
14
Sat
Raise a Glass
Sep 14 @ 3:00 pm

Raise a Glass logo banner

WHEN | Saturday, September 14th, 2019
TIME | 3:00pm-7:00pm
WHERE | Austins Bar & Grill: Directions | Website

Registration & Information

Sep
29
Sun
Reach for a Cure: San Diego
Sep 29 @ 4:00 pm
Join us for an afternoon of Football & Fun!

Sunday, September 29, 2019
Loading Dock
2400 Kettner Blvd, #110
San Diego, CA 92101

Online ticket sales end Friday, 9/27 at 9 p.m. PST.

4:00 p.m. to 9 p.m.

We’re excited to invite you to San Diego’s very first Reach for a Cure – Football & Fun benefitting Rettsyndrome.org. This entertaining event is designed to raise funds for a cure for Rett syndrome while having lots of fun at the same time.

Enjoy Sunday football, beer and a chance to connect with others who share a passion to create a world without Rett.  We’ll have a silent auction full of great items – perfect time to get holiday gifts, or something for yourself!

Registration & Sponsorship

View sponsorship document opportunities

All proceeds from sponsorships, donations, and tickets goes to Rettsyndrome.org, the longest-standing Rett syndrome research and family empowerment organization.

Oct
5
Sat
Purple Pumpkin Party
Oct 5 @ 5:00 pm

Join us for the 3rd Annual Purple Pumpkin Party!

The Purple Pumpkin Party to benefit the Scarlett Parks Foundation. This signifies that, in honor of their granddaughter Scarlett Parks, Don and Jodi Searcy will be conducting a fundraising event, the “Purple Pumpkin Party”. The event will take place October 5th, 2019 at the International Agri-Center in Tulare CA.

The Purple Pumpkin Party will be a celebration of a community coming together to help raise awareness and money to find a cure for Rett syndrome, consisting of dinner, entertainment, an auction, silent auction and many other fun items to bid on to help raise money needed to help find a cure.

Registration & Event Details

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