Events

Jun
18
Thu
RettGetAway – Postponed
Jun 18 @ 12:00 am – Jun 21 @ 12:00 am

RettGetAway: Postponed

After much consideration, our RettGetAway committee has decided to postpone the June 2020 RettGetAway in San Diego. The health of our children is of utmost concern. Once it is deemed safe and sound to convene large groups in public spaces again, we will evaluate a future Rett GetAway. Many were working to create this ‘life without limits’ opportunity. A special thanks to the Kayla Mosca Foundation, Surfing Madonna, Surfin’ Fire, Merlin’s Magic Wand in association with Legoland San Diego, The Cassara Carlsbad by Hilton, our CA State Rep Sherri Brady, and ACADIA Pharmaceuticals. We hope that all of our families and partners emerge from this situation whole, intact, and able to plan an even more extraordinary RettGetAway! If you have made any travel bookings for the RettGetAway, we advise you to cancel them now while forgivable and with no penalty. Rettsyndrome.org will be returning the group Legoland tickets awarded by Merlin’s Magic Wand so that a future award can be made again to either our group or to individuals who may choose to apply at another time (they only allow one Magical Day Out per family, one time) We appreciate your understanding, and we hope that you all stay healthy and safe. Please direct any questions to Paige Nues at [email protected] or Jennifer Mosca at [email protected] LEARN MORE
Jul
26
Sun
9th Annual Scramble for a Cure @ The Chief Golf Course
Jul 26 @ 8:30 am

9th Annual Scramble for a Cure

Date: Sat July 26th 2020 Cost: $300/Team Location: The Chief Golf Course, Bellaire MI Contact: Sue Knight (231) 495-9794 or [email protected] https://www.golfthechief.com/ Information & Registration
May
6
Thu
Rotary Club of Indialantic – Charity Golf Tournament @ Spessard Holland at Melbourne Beach
May 6 @ 9:00 am

Rotary Club of Indialantic - Charity Golf Tournament

Charity Golf Tournament & virtual Gala in support of Rettsyndrome.org. 40% of all proceeds go to Rettsyndrome.org Date: Saturday, May 22, 2021 Course: Spessard Holland at Melbourne Beach Information & Registration
May
10
Mon
8th Annual Charamella Golf Tournament @ Westover Golf Club
May 10 @ 11:00 am
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 10th, 2021 Due to the Covid-19 pandemic, we will be following the CDC guidelines inclusive of masks & social distancing. 11 – 12pm: Golf registration & Lunch 12:30pm: Shotgun Start 5pm: Tailgate, food truck

SIGN UP AS A FOURSOME OR INDIVIDUAL

Registration/Dinner All sponsors will need to provide company logo/artwork via email to Deb McLaughlin [email protected]. All payments & artwork must be received by May 3rd. Sponsorship If you can’t attend the event you can still make a general donation. Donate
Jul
13
Tue
Samantha Corpus Golf Tournament
Jul 13 @ 8:00 am
You Can't Miss the Final Samantha Corpus Golf Tournament Samantha's Farewell 15 July 13, 2021 Please join us for the legendary Samantha Corpus Golf Tournament, On Tuesday July 13th at The Blackhawk Country Club, as we will be hosting our 15th and Final Tournament. Due to the Pandemic we had to postpone the tournament last year. In spite of all the uncertainty the outpouring of love and support continued and many of you asked and hoped that we would be able to conclude this epic event in grand style. Information & Registration
Jul
25
Sun
Scramble for a Cure @ Chief Golf Couse
Jul 25 @ 7:30 am

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
Aug
20
Fri
Rip it for Rett
Aug 20 @ 8:00 am

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
IRSF Summer Trivia Night
Aug 20 @ 7:00 pm
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].
Information & Registration
Apr
9
Sat
2022 Golf Fore a Cure
Apr 9 @ 7:00 am

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 Registration
May
9
Mon
9th Annual Charamella Tournament
May 9 @ 11:00 am
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
Jun
10
Fri
Rip it for Rett Golf Tournament
Jun 10 @ 9:00 am
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/
Aug
1
Mon
Ella Foard Charity Golf Classic @ Providence Country Club
Aug 1 @ 8:00 am – 4:00 pm
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
27
Sat
A Day Fore Rett Golf Tournament @ DuBois Country Club
Aug 27 @ 8:00 am
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
Apr
24
Mon
Hannah’s Hope Golf Tournament @ Hillcrest Country Club
Apr 24 @ 7:00 am

**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
May
8
Mon
Mark Charamella Memorial Golf Outing & Dinner @ Westover Country Club
May 8 @ 11:00 am
Date: Monday, May 8, 2023 Time: Registration 11:00 am | Shotgun Start 12:15 pm | Tailgate & Dinner 5 pm Location:Westover Country Club (401 South Schuykill Ave, Jeffersonville, PA 19403) Join us for the 10th annual Mark Charamella Memorial Golf Outing & Dinner! "This will be the 10th year of hosting the Mark Charamella Memorial Golf Outing & Dinner. I know that my Dad would be so proud of his family, friends, and colleagues who come from near and far to join us year after year to raise money for Rett syndrome. Each year, when we gather for a fun day on the golf course, I definitely feel his presence and know this is exactly what he would want us to be doing. Please join us for our 10th year and our goal of raising $35,000 in honor of a great man!” - Deb McLaughlin, Event Chair, daughter to Mark and sister to Deirdre By participating in this tournament, you can hit the links to create a world without Rett for Deirdre and for many others.  INFORMATION & REGISTRATION
Jun
5
Mon
2023 IRSF Rett Syndrome Scientific Meeting
Jun 5 – Jun 7 all-day
Date: June 5-7, 2023 Time: All Day Location: Nashville, Tennessee LEARN MORE The research community is invited to join us in Nashville once again for the 2023 IRSF Rett Syndrome Scientific Meeting next June! The goal of this meeting is to bring together researchers studying Rett and related fields in academia, industry, and governmental agencies from all around the world. Together, we will continue to break down barriers and discuss ways to leverage learning in the lab to be rapidly deployed to the clinic. The meeting will consist of both poster and oral presentation sessions focused on basic, translational, and clinical work on Rett syndrome. Early bird pricing ends March 24 and the late-breaking abstract submission window will be open April 5-May 5. Thank you to our sponsors: Presenting Sponsor: Gold Sponsor: Silver Sponsor:
Bronze Sponsor:
Friend: DiamiR Biosciences mejo  
Jun
9
Fri
Rip it for Rett Golf Tournament @ Dunegrass Golf Club
Jun 9 @ 7:00 am
Date: Friday, June 9th, 2023 Location: Dunegrass Golf Club (200 Old Dunes Way, Old Orchard Beach, ME 04064) Time: 7 a.m. Registration | 8 a.m. Scramble The Rip it for Rett, hockey themed golf tournament is a blast (if we do say so ourselves), 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! INFORMATION & REGISTRATION
Jul
31
Mon
Norcina Charity Golf Outing @ Blue Hill Golf Course
Jul 31 @ 10:30 am – 8:30 pm
Date: Monday, July 31, 2023 Time: 10:30a Registration | 10:30a-12p Hot Breakfast | 12p Shotgun Start | 5:30-8:30p Dinner, Cocktails, and Prizes at Norcina Restaurant Location: Blue Hills Golf Course (285 Blue Hill Rd, Pearl River, NY 10965) & Norcina (186 N Main St, New City, NY 10956) Foursome: $940 Join us for Dinner & Open Bar $100 Golf Includes: Golf, Hot Breakfast, All Day Refreshments, Buffet Dinner at Norcina Restaurant, and Open Bar (Draft and Bottled Beer, House Wine, Well Liquor 5:30–8:30pm) Sponsorship Opportunities: Premium Sponsors ($5000) Large Banner at Norcina, Large Sign at breakfast, Beer Cart Sign, Sign at every Tee Breakfast Sponsors ($1500) Large Sign Hanging at Breakfast Beer Cart Sponsors ($500) Sign Hanging on Beer Cart at Golf Course Hole Sponsors ($125) Sign at Tee MORE INFORMATION
Sep
25
Mon
Goals Fore Gracie Golf Tournament @ Thousand Oaks Golf Club
Sep 25 @ 9:00 am
Date: Monday, September 25, 2023 Time: Registration 9 a.m. | Shotgun Start 10:30 a.m. Location: Thousand Oaks Golf Club (4100 Thousand Oaks Drive NE, Grand Rapids, MI) Event Chair: Rebecca & Andrew Visser (Contact Email) REGISTER & MORE INFORMATION Join the Visser family for their inaugural Goals Fore Gracie Golf Tournament in honor of their 4-year-old daughter with Rett syndrome, Gracie. Sponsorships, foursomes, and individual tickets are available now!
Oct
16
Mon
On the Ridge for Rett Golf Scramble @ Falcon Ridge Golf Course
Oct 16 @ 11:00 am
Date: Monday, October 16, 2023 Time: Registration 8 a.m. | Shotgun Start 10:00 a.m. Location: Falcon Ridge Golf Course (20200 Prairie Star Pkwy, Lenexa, KS 66220) Event Chair: Sam Evans (email) & Haley Douglass (email) REGISTER & MORE INFORMATION Join the Douglass and Evans family for their inaugural On the Ridge for Rett Golf Scramble in honor Vivian who has Rett syndrome. Sponsorships, foursomes, and individual tickets are available now!
May
13
Mon
Mark Charamella Memorial Golf Outing & Dinner @ Westover Country Club
May 13 @ 11:00 am
Date: Monday, May 13, 2024 Time: Registration 11:00 am | Dinner 5 pm Location:Westover Country Club (401 South Schuykill Ave, Jeffersonville, PA 19403) Join us for the 11th annual Mark Charamella Memorial Golf Outing & Dinner! We invite you to take part in the 11th Annual Mark Charamella Memorial Golf Outing & Dinner on May 13, 2024, at Westover Country Club. This tournament will benefit the International Rett Syndrome Foundation in memory of Mark Charamella and in honor of his daughter with Rett syndrome, Deirdre. By participating in this tournament, you can hit the links to create a world without Rett for Deirdre and for many others.  INFORMATION & REGISTRATION
Jun
18
Tue
2024 IRSF Rett Syndrome Scientific Meeting @ The Westin Westminster
Jun 18 – Jun 19 all-day
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:
Oct
14
Mon
On the Ridge for Rett Golf Scramble
Oct 14 all-day
Date: Monday, October 14, 2024 Time: TBD Location: Lenexa, KS Event Chair: Haley Douglass and Sam, Katie, & Parthy Evans More information coming soon!