Oct
9
Sat
2nd Annual Run for Rett 5k
Date: Saturday, October 9th, 2021 Location: Bradenton, FL We are very excited to have the Second Annual Run for Rett 5K to help spread awareness about Rett Syndrome. This year plans to be quite exciting with donations going to International Rett Syndrome Foundation as well the We Carry Kevan crew here to help any families who would like to join in the area with a child afflicted with Rett Syndrome. There will be food, prizes, and much more! Registration Make a Donation You can also check out our Facebook event for more information: https://www.facebook.com/events/261650685291726 Please direct any questions to event chair, Artie Phillips at [email protected]
Cheers to 5 years of the Iowa Stroll!
We are so excited to share that the 5th Annual Iowa Strollathon will be happening this year and we have so many fun ways for you to join in! Due to the Covid-19 pandemic, we have decided to get a little creative in order to continue the momentum to raise funds & awareness to get us one day closer to a world without Rett! This year, we are encouraging you to Stroll your own way- this can be ANYTHING you think of. Some examples could include; a t-shirt fundraiser, a neighborhood Stroll, a garage sale, chili cook-off competition….you name it and you can turn it into a way to raise funds & awareness for Rett. We are here to help you with whatever you come up with and there may be a prize for most creative Stroll .
We will be working hard to make this a fun & engaging experience.
Be sure to follow us on Facebook for exciting updates!
- We plan to host a small celebration on Saturday, October 9th for Rett families at Kinzler Construction from 12pm-2pm. Invitations will be sent to families via email & postcard.
- All others are asked to celebrate virtually on 10/09 by Strolling in your own neighborhoods, parks, etc!
Oct
16
Sat
Join us for the 2nd Annual South Carolina Strollathon! We hope to safely gather in-person this Fall and will keep you updated as the event becomes closer! Fundraising pages now open to create teams & personal pages for the Strollathon. Event Chairs: Stephanie Winckler, Danyell Flowers Follow us on Facebook for more event info & updates. Information & Registration Oct
23
Sat
Join us for the 19th Annual SoCal Strollathon! Join us virtually this Fall as you Stroll in your neighborhood or host a picnic to help overpower Rett. We will host a live event via Zoom on Saturday, October 23rd, 2021 at 12 noon PST. Please check back soon for more details. - Fundraising pages now open to create teams & personal pages for the virtual Strollathon.
- Event Chairs: Sherri Brady
- Follow us on Facebook for more event info & updates.
Join us for the 14th Annual St. Louis Strollathon Fall 2021! We miss you and can't wait to be together again. We hope to have a live, in-person Stroll on Saturday, October 23rd, 2021- more details to come! Until then, stay safe & be well. Fundraising pages now open to create teams & personal pages for the Strollathon. Event Chairs: Joyce Opinsky, Amy Kreher & Amanda Sommer ([email protected]) Follow us on Facebook for continued updates. Information & Registration Feb
27
Sun
Shop for Good: IRSF & Kendra Scott in Liberty Township OH
Date: Sunday, Feb 27th, 2022 Time: 12-3pm Location: Kendra Scott, 7560 Gibson Street, Liberty Township OH 45069 Come shop with IRSF at Kendra Scott for a chance to restock your jewelry box (or gifts for others) while supporting the International Rett Syndrome Foundation. A portion of each sale will go back to IRSF to help accelerate research towards treatments and ultimately a cure for Rett. If you aren’t local, you can still shop online. This is a great opportunity to help support IRSF during Rare Disease Day! Please direct any questions to Jackie Ventura at [email protected].
Mar
11
Fri
Mar 11 @ 10:00 am – 3:00 pm
Rett Syndrome Externally-Led Patient Focused Drug Development Meeting Date: Friday, March 11th, 2022 Time: 10am-3pm EDT Location: Online via video conference (meeting registrants will receive an email with a link to the meeting) 
The Rett Syndrome Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting is our community’s one shot to provide the Food and Drug Administration (FDA) with insights to influence the development of new drugs to treat Rett. The International Rett Syndrome Foundation is co-hosting this event with the Rett Syndrome Research Trust. These organizations invite and encourage you to attend. Come and share about the impact of Rett syndrome on your family and how symptom improvements would affect you and your loved one’s quality of life. Together, we can make a difference for the future of Rett syndrome healthcare. Information & Registration
The Rett Syndrome Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting is our community’s one shot to provide the Food and Drug Administration (FDA) with insights to influence the development of new drugs to treat Rett. The International Rett Syndrome Foundation is co-hosting this event with the Rett Syndrome Research Trust. These organizations invite and encourage you to attend. Come and share about the impact of Rett syndrome on your family and how symptom improvements would affect you and your loved one’s quality of life. Together, we can make a difference for the future of Rett syndrome healthcare. Information & Registration Apr
9
Sat
Golf Fore a Cure
When | Saturday, April 9, 2022 7:00 AM Registration 8:00 AM Shotgun Start Where | Cleveland Heights Golf Course Contact Karli Hughes (863) 899-0784 or [email protected] Join us for the 5th Annual Golf Fore a Cure benefiting the International Rett Syndrome Foundation. Sponsor opportunities available! Information and RegistrationApr
26
Tue
Apr 26 – Apr 27 all-day
One of the goals of our Rett Syndrome Scientific Meeting is to bring together researchers studying Rett and related fields in academia, industry, and governmental agencies from around the world. We invite all researchers to participate, discuss the latest in Rett syndrome science, and share their findings in this meeting. IRSF’s Rett Syndrome Scientific Meeting will be held immediately before the main portion of the ASCEND 2022 Rett Syndrome National Family Summit in Nashville, Tennessee. It will consist of both poster and oral presentation sessions focused on basic, translational, and clinical work on Rett syndrome. LEARN MORE & REGISTER Apr
27
Wed
Apr 27 – Apr 30 all-day
We’re gearing up for the ASCEND 2022 Rett Syndrome National Summit in Nashville! GAYLORD OPRYLAND RESORT & CONVENTION CENTER April 27-30, 2022 Designed to unite us as a community, this event will bring together parents, families, clinicians, researchers, and Rett organizations around the world. Together we can overcome the challenges of Rett syndrome and reach the summit of hope and healing–a world without Rett syndrome. Information & Registration Apr
29
Fri
APRIL 29, 2022
Blackwood Sporting Co., 11400 FM2854 Conroe, TX
It’s that time again! Let’s break some clays and go ALL IN to create a world without Rett! Gather your friends and family for an incredible day of tournament skeet shooting, live music, raffles, crawfish boil, and tons of fun to support this very special cause.Title Sponsor: Johnson Supply/Armstrong Air
EVENT INFO
-
- Friday, April 29th, 2022
- 12:00pm registration / 1:00 tournament
- Blackwood Sporting Co., 11400 FM2854 Rd, Conroe, TX 77304
- Crawfish boil, beverages, live music, raffle, and awards ceremony following the shootout
- Individual awards for 1st, 2nd, and 3rd place, and 1st Overall Team
- Experienced and Novice shooters are welcome!
- $900 per 4-man team
- $250 per individual
- Mulligan Package: 6 Shots for $30
- Carts included, ammunition not included
May
21
Sat
What: Cammy Can's Cinderella Story - 10th (almost) Annual When: May 21, 2022 5pm til 10pm Where: The Farehouse Market, 600 W Chicago Ave, Chicago, IL Why: To Fund a cure for Rett Syndrome! Information & Registration Make a Donation Follow CAMMY CAN on Facebook Jun
4
Sat
The Virtual Summer 5K is back this June!
Join our community around the world right from your local neighborhood, trail, or treadmill. Whether you run, walk, or stroll, you'll be going ALL IN for a cure!
Why Lace Up for Rett?
- It raises money for Rett syndrome research. Once you raise $200, we'll send you a Rett Racer t-shirt.
- It unites us as a community. Share your photos on race day to our Facebook Event Page or your personal fundraising page. Use the hashtag #rettracers.
- It's FUN! Whether you're a seasoned runner or on a stroll with your family, everyone can join in on the fun - anywhere and at any time!
THE DETAILS Saturday, June 4th, 2022 Anywhere you are! No registration fee; however, fundraising is encouraged
Contact Jackie Ventura at [email protected] with questions.
SIGN-UP OR LEARN MOREJul
26
Tue
Jul 26 @ 1:00 pm – 2:00 pm
Aug
1
Mon
Date: Monday, August 1st, 2022 Time: 8 a.m.-4 p.m. ET Location: Providence Country Club (6001 Providence Country Club Dr, Charlotte, NC 28277) The Ella Foard Foundation hosts the 12th Annual Charity Golf Classic on Monday, August 1st at Providence Country Club! Enjoy an exciting round of golf in a beautiful setting – all for a great cause!
The tournament includes 18 Holes of Captain’s Choice Golf, Coffee & Pastries upon arrival, Lunch and Awards Dinner, Raffles & Goody Bags, Skill (Luck?) Contests, and a Silent Auction!
Information & Registration Aug 1 @ 3:00 pm – 4:00 pm
Date: Monday, August 1st, 2022 Time: 3 p.m. EDT With the recent news about trofinetide’s new drug application (NDA) submitted to the FDA, we are entering a new space for Rett syndrome: FDA Review. While this is the first time for Rett, it won’t be the last, and our community has a lot of great questions: “What does submitting an NDA mean? What’s the next step? How much longer? When will we have an approved treatment? How will my loved one get access to this treatment?” To answer these questions and many more, IRSF is excited to bring back FDA expert, James Valentine, Esq., to join IRSF’s Chief Science Officer, Dr. Dominique Pichard for a live webinar. Join them as they review the FDA regulatory process, share what happens between a successful Phase 3 clinical trial and an FDA decision about a drug or therapeutic, and explain what could come next for trofinetide and the Rett community. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome. INFORMATION & REGISTRATION 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. Aug
20
Sat
The Morrison Family is hosting a pig raffle in honor of their daughter, Savannah who has Rett syndrome. They are excited to host this unique fundraiser as a way to help overpower Rett. Tickets are now available for purchase and the drawing will be hosted on Saturday, August 20th. Two prizes available and one person can win both prizes. Tickets are 1 for $10 or 6 for $50. Each prize is for half of a processed pig. If you don’t want to purchase a ticket but still want to support the Morrison Family, you may make a donation below. *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. MORE INFORMATION Please direct any questions to Sarah & Lonnie Morrison: Sarah: 206-947-0176 Lonnie: 520-507-1593 Aug
27
Sat
Date: Saturday, August 27th, 2022 Time: Registration 8:00 a.m. ET; Shotgun start 9:00 a.m. ET Location: Dubois Country Club (10 Lakeside Ave, DuBois, PA 15801) Join us August 27th as the Day Family hosts the 1st Annual Day Fore Rett Golf tournament in honor of their daughter, Thea. Valerie and Mike decided to use their passion for golf to get involved and help find a cure for their daughter. A Day Fore Rett features 18 holes along the scenic DuBois Golf Club, a hot dog lunch on the course, prizes and more all to help end Rett. Information & Registration Subscribe