Date: Tuesday, May 23, 2023
Time: 1-2 p.m. ET
In March our community celebrated a first for Rett: trofinetide, now known commercially in the US as DAYBUE™, became the first-ever FDA-approved treatment for Rett syndrome. This approval was the culmination of a journey that began more than a decade ago and succeeded only thanks to the perseverance and commitment of the researchers and families who participated in every stage of the clinical trials.
During this 1-hour live webcast, join IRSF and a panel of physicians who treat individuals with Rett syndrome. As principal investigators for the trials, our panel has firsthand knowledge of the potential benefits and side effects of trofinetide. They’ll answer your pre-submitted questions, share their anecdotal learnings, and provide information important for any parent considering DAYBUE for their child.
Our Panelists:
- Dr. Tim Benke, Professor of Pediatrics, Pharmacology, & Neurology at the University of Colorado/Children’s Hospital Colorado
- Dr. Robin Ryther, Director of the Rett Spectrum Clinic at Washington University School of Medicine
The panel will be moderated by Carmen Luna, IRSF Clinical Network Manager, and include questions submitted by our community.
Medical Disclaimer: All information, content, and material presented in this webinar is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding your specific medical condition.
Date: June 5-7, 2023
Time: All Day
Location: Nashville, Tennessee
The research community is invited to join us in Nashville once again for the 2023 IRSF Rett Syndrome Scientific Meeting next June! The goal of this meeting is to bring together researchers studying Rett and related fields in academia, industry, and governmental agencies from all around the world. Together, we will continue to break down barriers and discuss ways to leverage learning in the lab to be rapidly deployed to the clinic. The meeting will consist of both poster and oral presentation sessions focused on basic, translational, and clinical work on Rett syndrome.
Early bird pricing ends March 24 and the late-breaking abstract submission window will be open April 5-May 5.
Thank you to our sponsors:
Presenting Sponsor:
Gold Sponsor:
Silver Sponsor:
Bronze Sponsor:
Friend:
DiamiR Biosciences
mejo
Date: Friday, June 9th, 2023
Location: Dunegrass Golf Club (200 Old Dunes Way, Old Orchard Beach, ME 04064)
Time: 7 a.m. Registration | 8 a.m. Scramble
The Rip it for Rett, hockey themed golf tournament is a blast (if we do say so ourselves), a great round of golf on a great course with really awesome people. What more can you ask for? Find out the details on how to get in on the fun!
Date: June 22-25, 2023
Location: Morgan’s Wonderland Accessible Theme Park (5223 David Edwards, San Antonio, TX 78233)
For Event Information & FAQs, CLICK HERE.
IRSF’s RettAway is a destination vacation for families to spend time together and build connections with other members of our Rett community. It’s not a conference – there are no meetings or educational presentations. It’s an exclusive opportunity for your family to have fun together in a location that understands the challenges and joys of caring for a loved one with Rett syndrome.
This year’s RettAway brings us back to Morgan’s Wonderland in San Antonio, Texas! Join us for a long weekend of fun in the sun at this accessible theme park, including an afternoon at Morgan’s Inspiration Island Splash Experience reserved just for Rett families. There will be ample time to catch up with friends new and old throughout the weekend or explore all the city has to offer. No matter where you are on your Rett journey, there will be activities, support, and bonds to be made at this June’s RettAway!
REGISTRATION & HOTEL INFORMATION
Already registered?
Make sure to RSVP “Going” on the Facebook event page to stay up to date on deadlines, information, and to make plans to connect with other families!
Sponsored by:
Date: Saturday, July 15, 2023
Time: 12-4 p.m. (Check-in 12p, POUND 1p, Happy Hour 2-4p)
Location: IBEW Local 1 (5850 Elizabeth Ave, St Louis, MO 63110)
Channel your inner rockstar in POUND® – an exhilarating full body workout inspired by the infectious, energizing, and sweat-dripping fun of playing the drums. Designed for all fitness levels and easily modifiable, POUND® provides the perfect atmosphere for rockstars of all ages and abilities to let loose!
Come rock out workout, enjoy refreshments, vendors, a silent auction, and more!
Date: Monday, July 31, 2023
Time: 10:30a Registration | 10:30a-12p Hot Breakfast | 12p Shotgun Start | 5:30-8:30p Dinner, Cocktails, and Prizes at Norcina Restaurant
Location: Blue Hills Golf Course (285 Blue Hill Rd, Pearl River, NY 10965) & Norcina (186 N Main St, New City, NY 10956)
Foursome: $940
Join us for Dinner & Open Bar $100
Golf Includes: Golf, Hot Breakfast, All Day Refreshments, Buffet Dinner at Norcina Restaurant, and Open Bar (Draft and Bottled Beer, House Wine, Well Liquor 5:30–8:30pm)
Sponsorship Opportunities:
Premium Sponsors ($5000)
Large Banner at Norcina, Large Sign at breakfast, Beer Cart Sign, Sign at every Tee
Breakfast Sponsors ($1500)
Large Sign Hanging at Breakfast
Beer Cart Sponsors ($500)
Sign Hanging on Beer Cart at Golf Course
Hole Sponsors ($125)
Sign at Tee
Date: Saturday, August 5, 2023
Time: 9:30 a.m. – 4 p.m. PT
Location: Camp Arroyo (5535 Arroyo Rd, Livermore, CA 94550)
Our RettEd Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more.
The Morrison Family is hosting a pig raffle fundraiser in honor of their daughter, Savannah, who has Rett syndrome.
Each prize is for half of a processed pig! Two prizes are available, and one person can win both prizes. Tickets are now available for purchase and the drawing will be hosted on Saturday, September 9th.
*Must be located within 180 miles of Dragoon, AZ for local delivery. Outside of that range, winner(s) must be willing to pick up. Should winner choose to donate back the meat, an additional winner(s) will be drawn.
Please direct any questions to Sarah & Lonnie Morrison:
Sarah: 206-947-0176
Lonnie: 520-507-1593
Date: Saturday, September 9, 2023
Time: 9:00 a.m. – 5 p.m. CT (registration opens at 8:30a)
Location: Rett Syndrome & Related Disorders Clinic (Dallas, TX)
Our RettEd Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more.
Date: Saturday, September 9, 2023
Time: 10:00 a.m. – 2 p.m. Eastern
Location: Buffalo Creek Nature Park (154 Monroe Road, Sarver, PA 16055)
Event Chairs: Terre Gray and Kati Gray (Contact Email)
The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.