Jun
18
Tue
Date: June 18-19, 2024 Time: All Day Location: Westminster, Colorado LEARN MORE The research community is invited to join us in Colorado for the 2024 IRSF Rett Syndrome Scientific Meeting next June! Part of ASCEND 2024, the IRSF Rett Syndrome Scientific Meeting brings together scientists and researchers studying Rett syndrome and related areas from around the world. During this 2-day meeting, attendees representing academia, industry, and governmental agencies will share their latest research advances and discuss ways to leverage learning in the lab to be rapidly deployed in the clinic. The IRSF Rett Syndrome Scientific Meeting is the only annual, global, and comprehensive research meeting focused exclusively on Rett syndrome. Thank you to our sponsors: Presenting Sponsor: Platinum Sponsors:
Bronze Sponsors:
Anavex Life Sciences
DepYmed
Categories: homepage Special Events - Non-Fundraising Events
Jun
19
Wed
Jun 19 – Jun 22 all-day
Designed to unite us as a community, this event will bring together parents, families, clinicians, researchers, and Rett organizations around the world. Come join us in the Mile High City as we ascend to greater heights at The Westin Westminster. This location offers sweeping views of the Rocky Mountains and is conveniently situated just 15 minutes from both Denver and Boulder. Featuring a lineup of expert speakers, updates on Rett syndrome research, and opportunities to connect with your Rett community, ASCEND 2024 is not to be missed. Together we can overcome the challenges of Rett syndrome and reach the summit of hope and healing–a world without Rett syndrome. REGISTER & MORE INFORMATION
Thank you to our sponsors:
Presenting Sponsor: Platinum Sponsors:Bronze Sponsors:
Anavex Life Sciences
Anovo
Jul
8
Mon
Date: Monday, July 8, 2024 Time: Registration 9 a.m. ET | Shotgun Start 10:30 a.m. ET Location: Thousand Oaks Golf Club (4100 Thousand Oaks Drive NE, Grand Rapids, MI 49525) The Visser Family is excited to host their 2nd annual Goals Fore Gracie Golf Outing inspired by their 5-year-old daughter, Gracie. Join us for a round of golf, lunch, raffle, after tournament cocktails, and more! INFORMATION & REGISTRATION
Categories: homepage Special Events - General
Jul
13
Sat
Date: Saturday, July 13, 2024 Time: 12-4 p.m. 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! Learn More & Register Today!
Categories: homepage Special Events - General
Jul
20
Sat
Date: Saturday, July 20, 2024 Time: 2-5 p.m. ET Location: Henmick Farm & Brewery (4380 N Old State Rd, Delaware, OH 43015) Join us for this FREE, family-friendly event in support of finding a cure for Rett syndrome. We will have raffles, a silent auction, a live auction (with items from our daughters living with Rett), live music, food trucks, a kids' area with crafts, games, and music! INFORMATION & REGISTRATION
Categories: homepage Special Events - General
Sep
10
Tue
Sep 10 @ 4:00 pm – 5:00 pm
Date: Tuesday, September 10th Time: 4-5 pm ET INFORMATION & REGISTRATION Transitioning with Confidence: Enhancing Communication in Academic Settings The International Rett Syndrome Foundation (IRSF) invites you to this live RettEd session focusing on supporting students’ communication needs during school transitions. During this webinar, Emily Cleer Estades, a licensed SLP and mother to a 24-year-old with Rett syndrome, will share her insights from both professional and personal perspectives. She will discuss challenges and successes, offering advice on advocating for students and ensuring successful IEP and transition meetings. Then, Andrea Etkie, also a licensed SLP and Rett syndrome researcher, will present evidence-based strategies and innovative approaches. She will emphasize the importance of including students in transition discussions to ensure their voices are heard and their needs are met. This session aims to combine professional expertise with personal experience to enhance communication support during academic transitions for students of all ages with Rett syndrome, with emphasis on preparing for Adulthood Transition conversations that begin around age 14. Join us for an informative and engaging session! Thank you to our RettEd Empowerment Sponsors, presenting sponsor Acadia Pharmaceuticals and diamond sponsor Taysha Gene Therapies, for helping IRSF provide educational resources and support to families affected by Rett syndrome. Medical Disclaimer: All information, content, and material provided in this webcast 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 a medical condition.
Categories: Education Slider homepage Webinar
Sep
21
Sat
Sep 21 @ 5:00 pm – 8:00 pm
Date: Saturday, September 21, 2024 Time: 4-7 p.m. CT Location: Olathe Community Center (1205 E Kansas City Rd, Olathe, KS 66061) Raise a glass to a Saturday well-spent! Join us for this FREE, family-friendly event in support of finding treatments and a cure for Rett syndrome. We will have 50/50 raffle, a silent auction, DJ, food truck, Dunk Tank, a kids' area with crafts, games, and face painting! INFORMATION & REGISTRATION
Categories: homepage Special Events - General
Oct
2
Wed
RETT Syndrome Association of Australia is excited to announce the 9th World RETT Syndrome Congress. This will be held on the Gold Coast in Queensland, Australia on Wednesday the 2nd of October until Saturday the 5th of October 2024. MORE INFORMATION
Categories: Special Events - Meetings/Symposiums
Oct
11
Fri
Date: Friday, October 11, 2024 Time: TBD Location: Imperial, MO
Categories: Special Events - General
Oct
16
Wed
Date: Wednesday, October 16, 2024 Time: TBD Location: Rhinegeist Brewery (1910 Elm St, Cincinnati, OH 45202) Sip for a cause! Each month, Rhinegeist highlights four local non-profit organizations that are brewing positive change in our community. Grab a pint on Wednesdays from 5-8 pm, receive a token with each pint purchase, explore each organization, and vote for your non-profit of choice by placing your token in their designated dropbox! You may also make a monetary donation in any dropbox. At the end of the month, each organization receives a donation based upon the amount of “votes” they receive, while the organization with the most votes receives a bonus. So grab your pals, grab a pint, and support our local non-profits! MORE INFORMATION
Categories: Special Events - General
Oct
24
Thu
Date: Thursday, October 24th Time: 1-2 pm ET REGISTER NOW Epilepsy Treatments in Rett Syndrome The International Rett Syndrome Foundation (IRSF) invites you to this live RettEd session with a goal of educating families on an approach to the treatment of epilepsy in Rett syndrome. Guest Speaker: Robin Ryther, M.D., Ph.D., Associate Professor, Pediatric Epilepsy; Director, Rett Spectrum Clinic; Division of Pediatric and Developmental Neurology; Pediatric Epilepsy Center at Washington University and St. Louis Children's Hospital Department of Neurology This session will include a discussion of medication options but also non-medication options including special diets, surgical options, and supplements such as CBD oil. Dr. Ryther will also review special circumstances specific to Rett Syndrome to be considered. This information is appropriate for patients with Rett syndrome of all ages. Thank you to our RettEd Empowerment Sponsors, presenting sponsor Acadia Pharmaceuticals and diamond sponsor Taysha Gene Therapies, for helping IRSF provide educational resources and support to families affected by Rett syndrome. Medical Disclaimer: All information, content, and material provided in this webcast 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 a medical condition.
Categories: Education Slider homepage Webinar
Nov
10
Sun
Date: Sunday, November 10, 2024 Time: 12:30 p.m. ET Location: Watermark Country Club (1600 Galbraith Ave SE, Grand Rapids, MI 49546) Join us for a magical afternoon honoring some of Michigan's Rett Royalty and featuring Disney characters from Olivia Grace & Company. The event includes photo and autograph opportunities plus a special gift for our princes and princesses. A fancy tea party luncheon is included with your ticket purchase. Cash bar optional. RESERVE YOUR SEAT!
Categories: homepage Special Events - General
Date: Sunday November 10, 2024 Time: 5-9 p.m. CT Location: Houston Country Club (1 Potomac Dr, Houston, TX 77057) Get Ready to Raise your Glass! Join us for the 5th Annual Houston Raise a Glass for Rett Gala brought to you by the International Rett Syndrome Foundation (IRSF) and Johnson Supply. This year we will be at the Houston Country Club on Sunday, November 10th. We hope to exceed our goal of raising $185,000 for IRSF, and we’re grateful for your interest in supporting this important event.
Categories: homepage Special Events - General
Nov
16
Sat
Date: Saturday, November 16, 2024 Time: 9:00 a.m. - 5 p.m. ET (registration opens at 8:00a) Location: Children's Hospital of Philadelphia 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. LEARN MORE & REGISTER
Categories: Ed Day Education Slider homepage
Apr
5
Sat
Date: Saturday, April 5, 2025 Time: All Day Location: Nationwide Children's Hospital (Columbus, Ohio) 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. MORE INFORMATION COMING SOON!
Categories: Ed Day Education Slider homepage
May
3
Sat
Date: Saturday, May 3, 2025 Time: All Day Location: Children's Hospital Los Angeles (Los Angeles, CA) 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. MORE INFORMATION COMING SOON!
Categories: Ed Day Education Slider homepage
May
17
Sat
Date: Saturday, May 17, 2025 Time: 4 p.m. ET Location: The Grove in Newport, ME More information coming soon!
Categories: homepage Special Events - General
Jul
9
Wed
Date: July 9-12, 2025 Location: San Diego Area, California (Carlsbad & Oceanside) 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. MORE INFORMATION COMING SOON!
Categories: Ed Day Education Slider homepage
Sep
13
Sat
Date: Saturday, September 13, 2025 Time: All Day Location: Boston Children's Hospital (Boston, MA) 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. MORE INFORMATION COMING SOON!
Categories: Ed Day Education Slider homepage
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