Events

Nov
2
Sat
URMC Rett Syndrome Family Education Day @ University of Rochester Medical Center
Nov 2 @ 8:00 am
$10 registration fee per family including conference, breakfast and lunch. Families and caregivers: don't miss the opportunity to hear from leading doctors, researchers and service professionals in the Rett Syndrome field. Information & Registration For more information, email: delmonte.urmc.edu or [email protected]
Jan
7
Tue
RettEd in Spanish: ¿Qué es el síndrome de Rett?
Jan 7 @ 1:00 pm
Please join us Tuesday, January 7, 2020 at 1:00 pm eastern for a presentation in Spanish from our bilingual Rett syndrome expert neurologist Dr. Mario Petersen, Section Chief, Neurodevelopmental Pediatrics and Endowed Chair, The Gerber Center for Infant Development and Nutrition, at Helen DeVos Children's Hospital in Grand Rapids, MI, and recent past Medical Director of the Rett Syndrome clinic at Oregon Health Sciences University. We will discuss ¿Qué es el síndrome de Rett? This will be valuable for your Spanish-speaking loved ones who want to better understand Rett syndrome. RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
Feb
11
Tue
RettEd: Gene Therapy CRISPR/Cas9 Potential for Rett Syndrome
Feb 11 @ 1:00 pm
Dr. Kyle Fink and Dr. Dominique Pichard explore the use of CRISPR/Cas9 technologies for gene therapy in Rett syndrome research. This live webcast will be especially helpful to caregivers trying to understand the current state of this research and where we are headed. Questions and comments submitted in advance will be addressed, and there will be time for questions. Dr. Fink is a gene therapy neuro-scientist at UC Davis in San Diego. Dr. Pichard is Rettsyndrome.org's Chief Science Officer Visit our Education page for upcoming 2020 webcast topics, and to access recording links from past webcast and associated QA documents. Register Today
Mar
10
Tue
RettEd: Walking and Rett Syndrome feat. Dr. Meir Lotan
Mar 10 @ 1:00 pm
Dr. Meir Lotan is studying the effectiveness of home-based programs to enhance the functional abilities of girls with Rett syndrome. Dr. Lotan is an internationally renowned Rett syndrome physical therapist, author, and clinical researcher from the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel. We will discuss movement and orthopedic issues in Rett syndrome, how and when these typically occur, and what we can do about it. We will also discuss walking and ambulation across the lifespan, as well as effective strategies at home. Submit your questions or comments when you register. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
Apr
23
Thu
RettEd: What’s Going Right in Their Brain? Maximizing Neuroplasticity in Therapies
Apr 23 @ 1:00 pm
SPECIAL DAY: THURSDAY – The neuro-anatomy and circuitry assets of our children with Rett syndrome can change over time. Dr. Diener will explain how children can benefit from a well-developed, enriched therapy program. Dr. Diener will also share about her research project on understanding how Virtual Reality technology plays a productive role in OT and functional hand use. Presenter bio: Dr. Pam Diener is a highly respected neuroscientist and clinical researcher. Registration & Information
Nov
15
Sun
Rett Education 2020, Online Conference
Nov 15 – Nov 21 all-day

Rett Education 2020

Communicate, Educate, Advocate 7-day online conference with international expert speakers Date: November 15-21, 2020 Details: Unlike physical conferences where you can end up sitting through content you just don't need, Rett Education 2020 – Communicate, Educate, Advocate is delivered entirely online. Dip in and watch the specific talks you want or catch them all. It’s up to you! All talks will be available to watch again or watch later, as long as you have registered. REGISTRATION & INFORMATION
Oct
21
Fri
Rett Spectrum 5th Annual Family Education Symposium @ Washington University School of Medicine
Oct 21 @ 3:00 pm
Date: Friday, October 21, 2022 Time: 3:00 p.m. CT (entry in-person/zoom at 2:45p) Location: Washington University School of Medicine (660 S Euclid Ave, St. Louis, MO 63110) INFORMATION & REGISTRATION
Oct
22
Sat
IRSF RettEd Day at Kennedy Krieger Institute @ Kennedy Krieger Institute
Oct 22 @ 8:00 am – 4:00 pm
Date: October 22, 2022 Time: 8:00 a.m. - 4 p.m. Eastern Time Location: Kennedy Krieger Institute's Arnold J. Capute, MD, MPH Conference Center – Eighth Floor (1741 Ashland Avenue, Baltimore, MD 21205) 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. REGISTRATION & INFORMATION Make sure to follow the event on Facebook to stay up to date!
Apr
28
Fri
The Great Rett Shootout 2023 @ Blackwood Sporting Co.
Apr 28 @ 2:00 pm
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
Apr
29
Sat
Cammy Can’s 11th Annual Cinderella Story @ The Farehouse Market
Apr 29 @ 6:00 pm – 11:00 pm
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
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
May
23
Tue
Physician Panel: Answering Your Questions About Trofinetide
May 23 @ 1:00 pm – 2:00 pm
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.
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
Jun
22
Thu
2023 RettAway @ Morgan's Wonderland
Jun 22 – Jun 25 all-day
Date: June 22-25, 2023 Location: Morgan's Wonderland Accessible Theme Park (5223 David Edwards, San Antonio, TX 78233) For Event Information & FAQs, CLICK HERE. IRSF’s RettAway is a destination vacation for families to spend time together and build connections with other members of our Rett community. It’s not a conference – there are no meetings or educational presentations. It's an exclusive opportunity for your family to have fun together in a location that understands the challenges and joys of caring for a loved one with Rett syndrome. This year’s RettAway brings us back to Morgan’s Wonderland in San Antonio, Texas! Join us for a long weekend of fun in the sun at this accessible theme park, including an afternoon at Morgan’s Inspiration Island Splash Experience reserved just for Rett families. There will be ample time to catch up with friends new and old throughout the weekend or explore all the city has to offer. No matter where you are on your Rett journey, there will be activities, support, and bonds to be made at this June’s RettAway! REGISTRATION & HOTEL INFORMATION

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:
Jul
15
Sat
POUND Out Rett 2023 @ IBEW Local 1
Jul 15 all-day
Date: Saturday, July 15, 2023 Time: 12-4 p.m. (Check-in 12p, POUND 1p, Happy Hour 2-4p) Location: IBEW Local 1 (5850 Elizabeth Ave, St Louis, MO 63110) Channel your inner rockstar in POUND® - an exhilarating full body workout inspired by the infectious, energizing, and sweat-dripping fun of playing the drums. Designed for all fitness levels and easily modifiable, POUND® provides the perfect atmosphere for rockstars of all ages and abilities to let loose! Come rock out workout, enjoy refreshments, vendors, a silent auction, and more! INFORMATION & REGISTRATION
Aug
5
Sat
IRSF RettEd Day with UCSF Oakland Children’s CoE @ Camp Arroyo
Aug 5 @ 9:30 am – 4:00 pm
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
Sep
9
Sat
Fill Your Freezer for Rett 2023 @ Online
Sep 9 all-day
The Morrison Family is hosting a pig raffle fundraiser in honor of their daughter, Savannah, who has Rett syndrome. Each prize is for half of a processed pig! Two prizes are available, and one person can win both prizes. Tickets are now available for purchase and the drawing will be hosted on Saturday, September 9th. *Must be located within 180 miles of Dragoon, AZ for local delivery. Outside of that range, winner(s) must be willing to pick up. Should winner choose to donate back the meat, an additional winner(s) will be drawn. MORE INFORMATION Please direct any questions to Sarah & Lonnie Morrison: Sarah: 206-947-0176 Lonnie: 520-507-1593
IRSF RettEd Day with UTSW Dallas CoE @ Rett Syndrome & Related Disorders Clinic
Sep 9 @ 9:00 am – 5:00 pm
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
Pittsburgh Strollathon @ Buffalo Creek Nature Park
Sep 9 @ 10:00 am – 2:00 pm

Date: Saturday, September 9, 2023 Time: 10:00 a.m. - 2 p.m. Eastern Location: Buffalo Creek Nature Park (154 Monroe Road, Sarver, PA 16055) Event Chairs: Terre Gray and Kati Gray (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.
Nebraska Strollathon @ Yanney Heritage Park
Sep 9 @ 2:00 pm – 5:00 pm
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.
Sep
23
Sat
Cincinnati RettConnect Picnic @ Makino Park
Sep 23 @ 10:00 am – 1:00 pm
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.
Raleigh Strollathon @ Crowder County Park
Sep 23 @ 10:00 am – 1:00 pm

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.
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!
Sep
30
Sat
IRSF RettEd Day with Montefiore CoE @ Tri-State Rett Syndrome Center at Montefiore
Sep 30 @ 9:00 am – 5:00 pm
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
Philadelphia Strollathon @ East Goshen Township Park
Sep 30 @ 10:00 am – 1:00 pm

Date: Saturday, September 30, 2023 Time: 10:00 a.m. - 1 p.m. Eastern Location: East Goshen Township Park (1661 Paoli Pike, West Chester, PA 19380) Event Chairs: Siobhann Bennett (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.
Oct
1
Sun
Minnesota Strollathon @ Savage Environmental Learning Center McColl Pond
Oct 1 @ 2:00 pm – 5:00 pm
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.
Oct
7
Sat
New Jersey Strollathon @ Thompson Park, Old Orchard Picnic Pavilion
Oct 7 @ 9:00 am – 12:00 pm
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.
Maryland Strollathon @ Matthew Henson State Park
Oct 7 @ 10:00 am – 2:00 pm
Date: Saturday, October 7th, 2023 Time: 10:00 a.m.-1 p.m. ET Location: Matthew Henson State Park (13421 Georgia Ave, Silver Spring, MD 20906); park at the Matthew Henson Trail Park & Parking Area located behind the Global Mission Church Event Chairs: Toni Moore (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.
St. Louis Strollathon @ JCC St. Louis
Oct 7 @ 11:00 am – 2:00 pm
Date: Saturday, October 7th, 2023 Time: 10:00 a.m. CT Location: JCC St. Louis (2 Millstone Campus Drive, St. Louis, MO 63146) Event Chairs: Joyce Opinsky, Amy Kreher, & Amanda Sommer (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.
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!