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].

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

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

RUN FOR RETT

Saturday, April 23, 2022

IN PERSON EVENT!!! & VIRTUAL EVENT!!! Location: Busse Woods, Grove #28 Elk Grove, IL Schedule: 5K – 8:30 am (on-site registration begins at 7:30) 1 mile fun run – 9:00 am HOW TO RUN VIRTUALLY Register at raceroster.com Run anytime between April 16 and April 23, 2022. Choose your own course Most importantly….have fun and enjoy the time outside! To register for either event visit raceroster.com First 200 participants will receive an official Run for Rett T-Shirt! Contact Person: Diane Ross, Email: [email protected], Tel: 847-524-7540

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 29^th, 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

Information & Registration

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

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

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/

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

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

Date: Saturday, October 8th, 2022 Time: 9:30 am ET Location: Riverwinds Community Center (1000 Riverwinds Drive, West Deptford NJ 08086) Contact: Mandy Fordyce at [email protected] or 856-430-2047 Join the Fordyce Family & friends for the 2nd Annual Throw for a Cure Cornhole Tournament benefitting the International Rett Syndrome Foundation. Teams will throw for a cure in honor of Macie Fordyce. Hosted at the Riverwinds Community Center, participants will enjoy a cornhole competition, food trucks, vendors & a raffle. MORE INFORMATION

Date: Saturday, October 15th, 2022 Time: 9am-12pm ET Address: Southeastway Park, 5624 S. Carroll Rd, New Palestine, IN 46163 Register and Learn More Event Info: A great opportunity to run or walk in the cool fall weather, the Bee the Light 5K is the first annual race sponsored by The Shelby Foundation for Kindness Delivered. This exciting event on a paved trail will highlight the family-friendly environment of Southeastway Park which also includes bike trails, a playground, shelters, an education center, wooded areas, and a pond. This race is held in honor of Shelby Kraft, who passed away in early 2022, and 100% of registration proceeds will be donated to the International Rett Syndrome Foundation. Rett Syndrome is a neurologic disorder, primarily affecting girls and women, which can lead to significant disability. Shelby is also the namesake of Kindness Delivered, an organization that delivers kindness in Jesus' name throughout the community. For more information on Shelby and Kindness Delivered, visit kindnessdelivered.org.

Date: Saturday, October 29, 2022 Time: 11:00 a.m. ET Location: SC State House (1100 Gervais St, Columbia, SC 29208) INFORMATION & REGISTRATION

Date: Saturday, November 12th, 2022 Time: 8-9 p.m. ET Location: Virtual Livestream + In-Person Viewing Parties across the US Join us for the 3rd Annual Raise a Glass for Rett Gala, presented by Raising a Hand for Rett and Kathryn & Luke Kissam! GET VIRTUAL TICKETS Grab your commemorative beer or wine glass and join us for an evening of stories from your Rett community, inspiring updates on science and research advancements, and the opportunity to support Rett families all over the world. This special event will be broadcast live from New York City and reach thousands across the globe. Over the past two years, our donors, sponsors, and viewers have raised more than $400,000 to empower families and accelerate research towards a cure. Go ALL IN! Get your ticket to watch from your living room or learn more about a viewing party near you!

• HOUSTON
• MICHIGAN
• NEW YORK
• SAN DIEGO

Got your tickets? Make sure to let us know you're coming on our Facebook Event Page to get up-to-date information and connect with other attendees! Download the event's ONLINE JOURNAL for more information on the program, special messages, and all the nominations submitted by the community for our superheroes for Rett! For sponsorship opportunities or interest in hosting a viewing party in your city, please contact Jackie Ventura at [email protected].

Hannah’s 11th Annual Art Show for IRSF

Date: Saturday, December 10th Time: 2pm-4pm ET Location: Four Corners Art Gallery 148 N Main St, Mooresville, NC 28115 Join Hannah Carpenter for her annual art show for IRSF. Hannah works tirelessly all year long with her art instructor to create beautiful pieces of art. They are transformed into calendars, notecards and print all for sale at her holiday show. Proceeds benefit IRSF. Please direct any questions to Trisha Carpenter (Hannah’s mom) at [email protected].

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.

Date: Saturday, April 22, 2023 Time: 7 a.m. Registration | 8:30 a.m. 5K | 9 a.m. 1-Mile Fun Run Location: Due to circumstances beyond our control, we are moving the Run For Rett to Busse Woods North, Grove #28. It is the same location used in prior years.  Enter Busse Woods 1 block east of Route 53 on Golf Rd.  All other details remain the same. From the serious runner to the recreational runner to family members and friends of all ages, the Run For Rett is an event you don’t want to miss. Make a difference in the life of those affected by Rett syndrome and join us for the Run For Rett 5K Run/Walk & 1 Mile Fun Run. *First 200 participants receive an official Run For Rett t-shirt* INFORMATION & REGISTRATION

**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

Date: Friday, April 28, 2023 Time: 12 p.m. Registration | 1:00 p.m. Event Start Location: Blackwood Sporting Co. (11400 FM 2854 Rd, Conroe TX 77304) 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. INFORMATION & REGISTRATION

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

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

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

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!

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!