Apr
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)
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
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
27
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/A-Day-Fore-Rett.png)
Categories: Special Events - Golf Tournaments
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
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
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
Apr
24
Mon
**RESCHEDULED**
Date: Monday, April 24, 2023 Time: Registration 7:00 am ET; First flight tee off 8:30 am ET Location: Hillcrest Golf & Country Club (4011 N Boston Ave, Lubbock, TX 79415) Continental breakfast items available and lunch will be provided We invite you to take part in the First Annual Hannah’s Hope Golf Tournament rescheduled for April 24, 2023 at Hillcrest Country Club. This tournament will benefit the International Rett Syndrome Foundation in honor of Hannah Hooks. The inspiration behind our tournament is 10-year-old Hannah Hooks. Hannah lives in Lubbock and is in 5th grade at Lubbock-Cooper West Elementary. Hannah was born with a rare disease called Rett Syndrome. Rett syndrome is a rare genetic neurological disorder that leads to severe impairments, affecting nearly every aspect of the child’s life. In April of 2022 IRSF hosted their National Science and Family Summit and presented an update on a treatment for Rett Syndrome. Rett Syndrome has been treated in mice and there are multiple clinical trials going on throughout the world to bring a cure to the males and females living with Rett. A treatment for Rett will also lead to breakthroughs in many other diseases and disorders. In order to continue research, organizations like International Rett Syndrome Foundation need funds to contribute to the many companies who are seeking a treatment. INFORMATION & REGISTRATION Categories: Special Events - Golf Tournaments
May
8
Mon
![](https://www.rettsyndrome.org/wp-content/uploads/Charamella-Golf_Website.png)
![](https://www.rettsyndrome.org/wp-content/uploads/Charamella-Golf-Logo.jpeg)
Categories: homepage Special Events - Golf Tournaments
May
11
Thu
![](https://www.rettsyndrome.org/wp-content/uploads/Parent-Panel_Website-Event.png)
- Silvia Baker, parent to Olivia, age 17
- Patty Mevis, parent to Kira, age 16
- Erica Waggenspack, parent to Kerrigan, age 5
Categories: Education Slider
May
23
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Physician-Panel.png)
- 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
Categories: Education Slider homepage
Jun
9
Fri
![](https://www.rettsyndrome.org/wp-content/uploads/Rip-it-for-Rett_Website-Event-1400-×-613-px.png)
Categories: homepage Special Events - Golf Tournaments
Jun
22
Thu
![](https://www.rettsyndrome.org/wp-content/uploads/Event-Header.png)
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:![](https://www.rettsyndrome.org/wp-content/uploads/ACADIA-Logo-2.png)
Categories: Ed Day Education Slider
Jul
31
Mon
![](https://www.rettsyndrome.org/wp-content/uploads/Norcina-Header.png)
Categories: Special Events - Golf Tournaments
Aug
5
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/UCSF_Website-Event-Header-1400-x-613.png)
Categories: Ed Day Education Slider homepage
Sep
9
Sat
Sep 9 @ 9:00 am – 5:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/UTSW_Website-Event-Header-1400-x-613.png)
Categories: Ed Day Education Slider homepage
Sep
25
Mon
![](https://www.rettsyndrome.org/wp-content/uploads/Goals-for-Gracie-23_website-event.png)
Categories: homepage Special Events - Golf Tournaments
Sep
30
Sat
Sep 30 @ 9:00 am – 5:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/Montefiore_Website-Event-Header-1400-x-613.png)
Categories: Ed Day Education Slider homepage
Oct
6
Fri
Oct 6 @ 3:00 pm – 6:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/WUSM-Ed-Day.png)
Categories: Education Slider
Oct
16
Mon
![](https://www.rettsyndrome.org/wp-content/uploads/On-the-Ridge-for-Rett-calendar-image.png)
Categories: homepage Special Events - Golf Tournaments
May
13
Mon
![](https://www.rettsyndrome.org/wp-content/uploads/Golf-Event_FB-Cover.png)
![](https://www.rettsyndrome.org/wp-content/uploads/Charamella-Golf-Logo.jpeg)
Categories: homepage Special Events - Golf Tournaments
Jun
18
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Event-Header_ScineceMtg_2024.png)
![](https://www.rettsyndrome.org/wp-content/uploads/Acadia_Reg_rgb_primary_gradient.png)
![](https://www.rettsyndrome.org/wp-content/uploads/NeuroGene_Logo_®_Dark-Green-01_transparent-background.png)
![](https://www.rettsyndrome.org/wp-content/uploads/Taysha_Inline_Full-Color_RGB_300.png)
Bronze Sponsor:
DepYmed
Categories: homepage Special Events - Non-Fundraising Events
Jun
19
Wed
Jun 19 – Jun 22 all-day
![](https://www.rettsyndrome.org/wp-content/uploads/ASCEND24_Event-Header_1400x613.png)
Thank you to our sponsors:
Presenting Sponsor:![](https://www.rettsyndrome.org/wp-content/uploads/Acadia_Reg_rgb_primary_gradient.png)
![](https://www.rettsyndrome.org/wp-content/uploads/NeuroGene_Logo_®_Dark-Green-01_transparent-background.png)
![](https://www.rettsyndrome.org/wp-content/uploads/Taysha_Inline_Full-Color_RGB_300.png)
Bronze Sponsor (Family Conference):
Anovo
Oct
14
Mon
Date: Monday, October 14, 2024 Time: TBD Location: Lenexa, KS Event Chair: Haley Douglass and Sam, Katie, & Parthy Evans More information coming soon!
Categories: homepage Special Events - Golf Tournaments
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