Topic: Respiratory Issues in Rett Syndrome, esp during cold and flu season Speaker: Marianna Sockrider, MD, DrPH, AE-C, TCH Click to View Video Read the Q&A

Topic: Puberty and Adulthood: Information for moms, dads, everyone! Speaker: Jane Lane, RN, UAB Click to View Video Audience questions are all addressed by our Speaker within the recording

Topic: Common GI Issues in Rett syndrome, How to Intervene and Clinical Research Outlook Speaker: Dr. K Motil, BCM, Texas Children's Hospital Click to View Video Audience questions are all addressed by our Speaker within the recording

Topic: IEP: Strategies for Rett Success Speaker: Valerie Owen, PhD Click to View Video (you will be prompted to submit a registration form to view the video) Audience questions are all addressed by our Speaker within the recording

Topic: Communication- Making it Count Speaker: Judy Lariviere, M.Ed.,OTR/L, UCSF Click to View Video (you will be prompted to submit a registration form to view the video) Audience questions are all addressed by our Speaker within the recording

Topic: U.S.-Russia Rett syndrome Cultural Exchange Speaker: Olga Timutsa, President, Rett Syndrome Association of Russia, Mother to Katerina Olga Timutsa will be visiting the U.S. as a guest of Rettsyndrome.org for a cultural exchange focused on diagnosis, care, and life for children and adults with Rett syndrome and their families. Hear Olga share about life in Russia with Rett syndrome and how our research and efforts have a global impact. Click Here to View Video

Topic: Understanding Autonomic Dysfunction in Rett Syndrome Speaker: Jeff Neul, MD, PhD, Vanderbilt University Click to View Video (you will be prompted to submit a registration form to view the video) Audience questions are all addressed by our Speaker within the recording

Topic: Epilepsy: Incidence, Treatments & Research Speaker: Eric Marsch, MD, PhD, CHOP Click to View Video Read the Q&A

Topic: Planning for a Protected Tomorrow with Special Update on ABLE Accounts Speaker: Mary Anne Ehlert, CFP, Protected Tomorrows, Inc Click to View Video  Read the Q&A

Topic: Gross Motor Skills, benefits of Environmental Enrichment Speaker: Jenny Downs, PhD Telethon Kids Institute, AU Click to View video

Topic: Siblings Unique Concerns, Unique Opportunities Speaker: Emily Holl, Director, Sibling Support Project Click to View Video

Topic: Nutrition Strategies for Rett Syndrome Speaker: Suzanne Geerts, MS, RD, LD UAB Register

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: Saturday, April 29, 2023 Time: 5-10 p.m. CT Location: The Farehouse Market (600 W Chicago Ave, Chicago, IL 60654) We're excited to be back at The Farehouse Market for a night of food & drink, a live and silent auction, and the chance to help us celebrate Cammy's 14th Birthday! 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: Tuesday, May 23, 2023 Time: 1-2 p.m. ET INFORMATION & REGISTRATION In March our community celebrated a first for Rett: trofinetide, now known commercially in the US as DAYBUE™, became the first-ever FDA-approved treatment for Rett syndrome. This approval was the culmination of a journey that began more than a decade ago and succeeded only thanks to the perseverance and commitment of the researchers and families who participated in every stage of the clinical trials. During this 1-hour live webcast, join IRSF and a panel of physicians who treat individuals with Rett syndrome. As principal investigators for the trials, our panel has firsthand knowledge of the potential benefits and side effects of trofinetide. They'll answer your pre-submitted questions, share their anecdotal learnings, and provide information important for any parent considering DAYBUE for their child. Our Panelists:

• 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

The panel will be moderated by Carmen Luna, IRSF Clinical Network Manager, and include questions submitted by our community. Medical Disclaimer: All information, content, and material presented in this webinar is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding your specific medical condition.

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: Saturday, August 5, 2023 Time: 9:30 a.m. - 4 p.m. PT Location: Camp Arroyo (5535 Arroyo Rd, Livermore, CA 94550) Our RettEd Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more. REGISTER & MORE INFORMATION

Date: Saturday, September 9, 2023 Time: 9:00 a.m. - 5 p.m. CT (registration opens at 8:30a) Location: Rett Syndrome & Related Disorders Clinic (Dallas, TX) Our RettEd Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more. REGISTER & MORE INFORMATION

Date: Saturday, September 9th, 2023 Time: 1:00 p.m. - 4 p.m. CT Location: Yanney Heritage Park - ERC Building (2020 W 11th St, Kearney, NE 68845) Event Chairs: Jacy Horst, Megan Ladenburger, & Elly Gullion (Contact Email) REGISTER & MORE INFORMATION Make sure to follow the event on Facebook to stay up to date! The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

Date: Saturday, September 23, 2023 Time: 10:00 a.m. - 1 p.m. ET Location: Makino Park (6100 Kopfler Ct, Mason, OH 45040) REGISTER & MORE INFORMATION IRSF’s RettConnect is a free picnic and outing for families to build connections with other members of the Tristate Rett syndrome community. Registration is free but required.

Date: Saturday, September 23, 2023 Time: 10:00 a.m. - 1 p.m. Eastern Location: Crowder County Park (4709 Ten-Ten Road, Apex, NC 27539) Event Chairs: Gwen Noecker  (Contact Email) REGISTER & MORE INFORMATION The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

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: Saturday, September 30, 2023 Time: 9:00 a.m. - 5 p.m. ET (registration opens at 8:30a) Location: The Children's Hospital at Montefiore (Bronx, New York) Our RettEd Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more. REGISTER & MORE INFORMATION

Date: Sunday, October 1st, 2023 Time: 1-4 p.m. CT Location: Environmental Learning Center (13550 Dakota Ave S, Savage, MN 55378) Event Chairs: Mary Kallstrom (Contact Email) Save the date to WALK N' ROLL with us! REGISTER & MORE INFORMATION Make sure to follow the event on Facebook to stay up to date! The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

Date: Sunday, October 7th, 2023 Time: 9:00 a.m. - 12 p.m. Eastern Location: Thompson Park, Old Orchard Picnic Pavilion (805 Newman Springs Road, Lincroft, NJ 07738-1695) Event Chairs: Leslie Greenfield & Allison Fitzgerald (Contact Email) REGISTER & MORE INFORMATION The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.