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
![](https://www.rettsyndrome.org/wp-content/uploads/EL-PFDD-Email.png)
Apr
9
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/2021-Golf-Fore-a-Cure_Web_Banner.png)
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
![](https://www.rettsyndrome.org/wp-content/uploads/22-Science-Meeting-Twitter-Post-760x425.png)
Apr
27
Wed
Apr 27 – Apr 30 all-day
![](https://www.rettsyndrome.org/wp-content/uploads/1894_IRSF_NtnlSummit_HmpgBNRRev_FLR-760x425.jpg)
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
Categories: Special Events - General
May
9
Mon
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. To learn more, you may view the brochure here. Join us on Monday, May 9th, 2022 11 – 12pm: Golf registration & Lunch 12:30pm: Shotgun Start 5pm: Tailgate, food truck
SIGN UP AS A FOURSOME OR INDIVIDUAL
Registration & Sponsorship All sponsors will need to provide company logo/artwork via email to Deb McLaughlin [email protected]. All payments & artwork must be received by May 2nd. If you can’t attend the event you can still make a general donation. Donate Categories: Special Events - Golf Tournaments
May
21
Sat
![Cammy's Golden birthday](https://www.rettsyndrome.org/wp-content/uploads/Cammy-Can_event-banner.jpg)
Categories: Special Events - General
Jun
10
Fri
Location: Dunegrass Country Club, 200 Wild Dunes Way, Old Orchard Beach, ME 04064 The Rip it for Rett, hockey themed golf tournament is a fun way to go ALL IN for a cure. Enjoy a great round of golf on a killer course with really awesome people. What more can you ask for? Find out the details on how to get in on the fun! Join this sibling group as they raise money for IRSF in honor of their sister! Register, sponsor or donate here: http://www.ripitforrett.com/
Categories: Special Events - Golf Tournaments
Jul
26
Tue
Jul 26 @ 1:00 pm – 2:00 pm
Categories: Education Slider Webinar
Aug
1
Mon
![](https://www.rettsyndrome.org/wp-content/uploads/Ella-Foard-Charity-Golf-Classic-1.png)
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 Categories: Special Events - Golf Tournaments
Aug 1 @ 3:00 pm – 4:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/FDA-RettEd-1400-×-613-px.png)
Categories: Education Slider Webinar
Aug
20
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/Fill-Your-Freezer-for-Rett.png)
Categories: Special Events - General
Aug
27
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/A-Day-Fore-Rett.png)
Categories: Special Events - Golf Tournaments
Sep
24
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/Strollathon_Web-Event-1000-×-438-px.png)
Categories: Special Events - Strollathons
![](https://www.rettsyndrome.org/wp-content/uploads/Strollathon_Nebraska-1.png)
Categories: Special Events - Strollathons
Sep
27
Tue
Sep 27 @ 1:00 pm – 2:00 pm
![](https://rett.wpengine.com/wp-content/uploads/Lifecare-Planning_webevent.png)
- Legal Planning: Special Needs Trusts, Letter/Memorandum of Intent, Guardianship
- Financial Planning: How to fund a Special Needs Trust, ABLE accounts, and more
- Benefit Planning: Finding and accessing federal benefits like SSI & SSDI, Medicaid, Waivers, etc.
- Defining Your Replacement Team: What happens when you can no longer provide direct care alone?
Categories: Education Slider Webinar
Oct
2
Sun
![](https://rettsyndrome.org/wp-content/uploads/Strollathon_Web-Event_Minnesota.png)
Categories: Special Events - Strollathons
Oct
8
Sat
![](https://rettsyndrome.org/wp-content/uploads/Throw-for-a-Cure.png)
Categories: Special Events - General
![](https://rettsyndrome.org/wp-content/uploads/Strollathon_Web-Event_Cincinnati.png)
Categories: Special Events - Strollathons
![](https://www.rettsyndrome.org/wp-content/uploads/Strollathon_Web-Event_StLouis.png)
Categories: Special Events - Strollathons
Oct
21
Fri
Oct 21 @ 3:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/2022-Rett-Spectrum-Series-Banner.jpg)
Categories: Ed Day Education Slider
Oct
22
Sat
Oct 22 @ 8:00 am – 4:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/RettEd-Day_KKI_Website-1400x613-1.png)
Categories: Ed Day Education Slider
![](https://www.rettsyndrome.org/wp-content/uploads/Strollathon_Web-Event_SoCal.png)
Categories: Special Events - Strollathons
Oct
29
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/Rally-for-Rett-Image.png)
Categories: Special Events - General
Oct
30
Sun
![](https://www.rettsyndrome.org/wp-content/uploads/Classy_Facebook-Sharing-Image-1200-×-630-px-760x425.png)
Categories: Special Events - Strollathons
Nov
5
Sat
![](https://rettsyndrome.org/wp-content/uploads/Classy_Facebook-Sharing-Image-1200-×-630-px-1.png)
Categories: Special Events - Strollathons
Nov
12
Sat
Nov 12 @ 8:00 pm – 9:00 pm
![](https://rettsyndrome.org/wp-content/uploads/RAG-Event-Listing-B.png)
Categories: Special Events - General
Dec
6
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/RettEd-3-Web-Header.png)
- Paul and Janelle Jochim, parents to Jill (age 46)
- Megan Ladenburger and Mom Shanna Sowers, sister and mom to Brittany (age 34)
- Theresa Bartolotta, mom to Lisa (age 33)
- Moderator: Paige Nues, IRSF Family Empowerment Director and mom to Katie (age 20)
- Special Guest: Sheila Lullo, Special Projects Coordinator of Quality Outcomes at Clearbrook in Illinois, a provider of community-based residential options, day programs, and more to adult individuals with special needs.
Categories: Education Slider Webinar
Dec
10
Sat
Hannah’s 11th Annual Art Show for IRSF
![](https://www.rettsyndrome.org/wp-content/uploads/Hannah-Painting-2-760x425.jpg)
Categories: Special Events - General
Jan
28
Sat
Siera’s 35th Birthday Bash for IRSF
Date: Saturday, January 28th, 2023 Time: 5pm-11pm Location: St. Louis Moose Lodge 1566, 811 Michigan Ave, St Louis MI 48880 Come help us celebrate Siera’s 35th birthday while raising funds for IRSF. Enjoy an evening of entertainment, dinner & cash bar, live & silent auction and more! All ages welcome. To RSVP, please contact Lisa Rushin at: 989-285-5994. Unable to join but want to donate- you may do so here: https://rettgrassrootevents.funraise.org/fundraiser/lisa-rushin All proceeds to benefit IRSF.![](https://www.rettsyndrome.org/wp-content/uploads/Seira-Bday-2023-Flyer.jpg)
Categories: Special Events - General
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