Jul
25
Sun
Scramble for a Cure
Date: July 25th, 2021 Details: 18 hole scramble at The Chief Golf Course 7:30am coffee & muffins 8:30am shotgun start Lunch provided by The Pelican's Nest Proceeds go to IRSF Information & Registration Categories: Special Events - Golf Tournaments
Jul
28
Wed
![](https://www.rettsyndrome.org/wp-content/uploads/35ea51cb1f3f8303b1b6b8df18262bbf.jpg)
Aug
20
Fri
Rip it for Rett
The Rip it for Rett, hockey themed golf tournament is a blast, 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! Join this sibling group as they raise money for IRSF in honor of their sister! Sponsorships and foursomes are still available. Information Registration & Sponsorships Categories: Special Events - Golf Tournaments
Join us for another Trivia Night with IRSF! You’ll have a chance to compete for prizes, test your trivia knowledge & support Rett syndrome at the same time!
- Date: Friday, August 20th at 7pm EST/ 6pm CST
- Space will be limited so check back for information on team registration.
- Sponsorship opportunities are available!
- Please direct any questions to Jackie Ventura at [email protected].
Categories: Special Events - Non-Fundraising Events
Sep
22
Wed
Sep 22 @ 1:00 pm
Why should your pharmacist be an active partner in your child's care team? Join us to hear directly from pharmacists who are Rett family members that understand the issues and challenges we face when it comes to getting our loved ones to take their medicine. You'll walk away from this RettEd learning: • How medicines are formulated and why • How to organize your loved one's medication management (especially if they have swallowing issues or a g-tube), • How to improve communication with prescribing doctors • How to get help with securing insurance authorizations, and more! Information & Registration
Categories: Education Slider
Nov
10
Wed
Next Level Nutrition
Getting proper nutrition is especially challenging for those with Rett. The news is always filled with information on special diets, allergies, and food sensitivities, but how do you sift through it? How do you decide what’s best for your loved one with Rett? This interactive webinar with parent panel and dietician expert Suzanne Geerts can help! Date: Wednesday, November 10, 2021 Time: 4:30pm Registration is free but required. Registration & Information Submit your questions when you register. International Rett Syndrome Foundation's educational programming is made possible through a sponsorship from ACADIA Pharmaceuticals, Taysha Gene Therapies, and Novartis Gene Therapy. Categories: Education Slider Webinar
Dec
8
Wed
Occupational Therapy Strategies: Maximizing Hand Function + Feeding
People with Rett often have difficulty controlling hand movements, which can lead to frustration in using communication devices and participating in adapted recreation and many daily activities. Feeding in Rett patients can also be challenging because of decreased motor skills when chewing and swallowing as well as communication issues in relaying what they want. If you're facing either of these issues, finding a trained therapist who understands Rett is key to creating reasonable goals, managing expectations, and perhaps recovering gains lost during a regressive phase of Rett. Todd Levy and Emily Scott from Children's Hospital of Philadelphia and IRSF Center of Excellence will discuss strategies they've seen work in Rett patients and outline the criteria to look for in finding an occupational therapist that will meet your loved one's needs. Information & RegistrationJan
11
Tue
Music Through Our Ears and Our Hands
Date: January 11, 2022 Time: 1pm Eastern Time Music Therapy: Neuroscience; Clinical Goals; Practical How-To's We know our children have a strong affiliation to music. They have their favorites. It is often a go-to to calm, focus, or motivate them. Why? In this RettEd, we will hear from professionals and parents about the importance of Music Therapy in Rett syndrome. And how does Music Therapy happen in Rett differently than traditional MT? How might you get it going in your everyday life or through an online music group? You will takeaway this and much more. Information & Registration Categories: Education Slider Webinar
Jan
27
Thu
Jan 27 @ 3:00 pm
Join IRSF and RSRT on Tuesday, January 27, 2022 from 3 to 4 pm EST for a community webinar to discuss the upcoming March 11, 2022 Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on Rett syndrome.
Discover why your voice is critical to inform the development and review of new drugs to treat Rett syndrome. Come learn how you can make your voice heard as a participant on March 11th. Learn more about the meeting with guest speakers:- Larry Bauer, RN, MS, Sr. Regulatory Drug Expert, Hyman, Phelps, & McNamara, PC
- James Valentine, JD, MHS, Senior Associate, Hyman, Phelps & McNamara, PC
Categories: Education Slider Webinar
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)
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
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Categories: Special Events - Golf Tournaments
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