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
15
Wed
RettEd: Longevity in Rett syndrome, Myths and Facts feat. Dr. Alan Percy and a panel of experts
Jul 15 @ 1:00 pm
Please join us WEDNESDAY, July 15, 2020 (note: this is not on our usual Tuesday) at 1:00 pm Eastern Time (New York) with Dr. Alan Percy from the University of Alabama at Birmingham and Primary Investigator for the Natural History Study, along with a panel of experts, as we discuss Myths and Facts around life expectancy in Rett syndrome. Rett syndrome is a complex disorder, and inaccurate or invalid facts cause more harm than good. So join this webinar to learn the facts. Hear from experts and parents. More than empowering, it can be life-saving for our children with Rett syndrome. Even though the topic is difficult to talk about, we know you think about it. Let's dispel the myths. We believe that transformative treatments will come from gene therapy, medications and neuro-habilitative therapies. Our research strategy targets every possible approach so that we continue to not just improve longevity, but to decrease syndrome impact. We remain committed to creating solutions for today, to improve lives today, while we work to create a world without Rett syndrome. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Jul
30
Thu
Casting 4 A Cure 2020 – Cancelled
Jul 30 @ 9:00 am

Casting 4 A Cure 2020 – Cancelled

July 30-Aug 03 Casting 4 A Cure is a loose band of compadres and compatriots who fly fish and fundraise to find a cure for Rett Syndrome. We have pulled together many of the fly fishing industry's leaders and they have taken on the cause like it is their own. Come join us at one of the events or become a sponsor and help the thousands of girls affected by this crippling neurological disorder. Information
Aug
11
Tue
RettEd: What Hurts? Understanding Pain and Rett Syndrome feat. Dr. Frank Symons
Aug 11 @ 1:00 pm
Please join us Tuesday, August 11, 2020 at 1:00 pm Eastern Time (New York) with Dr. Frank Symons, Associate Dean for Research and Policy, Department of Psychology, and the Center for Neurobehavioral Development at the University of Minnesota as we discuss issues of pain in Rett syndrome. Rett syndrome is a complex disorder, and sharing of accurate information is more than empowering, it can be life-saving for our children with Rett syndrome. So join this webinar to learn the facts. Even though the topic is difficult to talk about, we know you think about it. In terms of pain, Dr. Symons' areas of specific research include (a) the reliable and valid assessment of pain in children and adults with significant communicative and motor impairments; (b) the relation between behavioral and biological variables as markers for altered pain; (c) modifying/adapting sensory testing; and (d) the relation between pain and problem behavior, specifically self-injury. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Sep
8
Tue
RettEd: Holiday Life Hacks for Rett Syndrome feat. a panel of parent experts
Sep 8 @ 5:00 pm – 6:30 pm
Please join us Tuesday, September 8, 2020 at 5:00pm Eastern Time (New York) with Rettsyndrome.org and a panel of creative experienced parents who are ready to share their Rett Life Hacks, especially how to plan and execute inclusive and enjoyable dress-up and gift-giving celebrations for the whole family such as birthday parties, Halloween, school field trips and the upcoming holidays. "Life Hacks" are simple and clever tips and techniques for accomplishing tasks more easily and efficiently, overcoming many of our common Rett-life frustrations in simple and deliciously clever ways. Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone. Join this webinar to learn how a little creativity and out-of-the-box thinking can expand everyone's horizons! With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Sep
12
Sat
9th Annual Nebraska Strollathon: Virtual Edition
Sep 12 @ 9:00 am

9th Annual Nebraska Strollathon - Virtual Edition

Join Us for the 9th Annual Nebraska Strollathon At Rettsyndrome.org, the health & well being our of community is of utmost importance. Due to the Covid-19 pandemic, we have decided to host this year's Stroll VIRTUALLY! We have some tricks up our sleeve to make it a fun & engaging experience! Saturday, September 12th 2020 Event Chairs: Jacy Horst & Megan Ladenburger & Elly Gullion Information & Registration
Sep
20
Sun
15th Annual Portland Strollathon
Sep 20 all-day
  Join us for the 15th Annual Portland Strollathon: Virtual Edition! After thoughtful consideration, we have decided to go VIRTUAL for the Portland Stroll! Sunday, September 20th: any time! Stroll at your leisure through your neighborhood, local park or hop on the treadmill! Follow us on Facebook for event updates, contests and more! Event Chair: Lacey & Leigh Calvert Information & Registration
Sep
26
Sat
17th Annual Cincinnati Strollathon: Virtual Edition
Sep 26 @ 9:00 am

17th Annual Cincinnati Strollathon: Virtual Edition

Join us for the 17th Annual Cincinnati Strollathon- VIRTUALLY! At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we have decided to host this year's Stroll VIRTUALLY. We have some tricks up our sleeve to provide a fun and engaging virtual experience! Be sure to follow us on Facebook to stay up to date on our fun virtual activities: facebook.com/Cincinnati-Tri-State-Strollathon Date: September, 26th, 2020 Location: your neighborhood, walking trail or treadmill! Event Chairs: Brittney Gibson, Jim Magato, & Jennifer Magato Information & Registration
Oct
4
Sun
14th Annual Minnesota Virtual Strollathon
Oct 4 @ 9:00 am

14th Annual Minnesota Virtual Strollathon

Join us for the 14th Annual Minnesota Virtual Strollathon!
  • Sunday October 4th, 2020
  • Location: Virtual
  • Event Chair: Mary Kallstrom ([email protected])
Information & Registration
New Jersey Strollathon
Oct 4 @ 10:00 am

Join us for the 12th Annual New Jersey Strollathon- VIRTUALLY!

At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the Covid-19 pandemic, we will be going Virtual this year! We have some tricks up our sleeve to make this a fun & engaging event. Date: Sunday, October 4th, 2020 Location: Your neighborhood, local walking trail or treadmill! Follow us on Facebook for contests, event updates and more! Event Chair: Leslie Greenfield ([email protected]) Information & Registration
Oct
13
Tue
RettEd: Clinical Trial Update
Oct 13 @ 1:00 pm
Please join Rettsyndrome.org on Tuesday, October 13, 2020 at 1:00pm Eastern Time (New York) for status updates on clinical trial and research enrollment opportunities in the U.S. Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone. Join this webinar to learn how we all have a role to play in research progress. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Oct
17
Sat
13th Annual St. Louis Virtual Strollathon
Oct 17 @ 9:00 am

13th Annual St. Louis Virtual Strollathon

Dates: Saturday, October 17, 2020 Location: Virtual Event Chairs: Joyce Opinsky & Amy Kreher ([email protected]) Information & Registration
7th Annual Raleigh Strollathon: Virtual Edition
Oct 17 @ 10:00 am

7th Annual Raleigh Strollathon: Virtual Edition

Join us for the 7th Annual Raleigh Strollathon VIRTUALLY! Please join us on Saturday, October 17th at 11am EST on Facebook for our 'virtual' event. Be sure to wear your past or present Stroll apparel and share photos on our FB page. Follow our Facebook page for more info, contests and more! Facebook page: https://www.facebook.com/NCIRSFStrollRaleigh/ Questions? Contact: Gwen Noecker ([email protected]) or (919) 426-5554. Information & Registration
Oct
24
Sat
18th Annual SoCal Virtual Picnic & Strollathon
Oct 24 all-day

18th Annual SoCal Virtual Picnic & Strollathon

Join us for the 18th Annual SoCal Picnic & Strollathon - Virtual Edition!
  • Date: October, 24th, 2020
  • Location: Virtual
  • Event Contact: Sherri Brady (562-619-0109 or [email protected])
Information & Registration
1st Annual South Carolina Virtual Strollathon
Oct 24 all-day

1st Annual South Carolina Virtual Strollathon

Join us for the 1st Annual South Carolina Virtual Strollathon! Information & Registration
Raise a Glass Against Rett: Virtual Edition
Oct 24 @ 8:00 pm

Raise a Glass Against Rett: Virtual Edition

Date:Saturday, October 24th Time: 8pm EST Be inspired by stories from our community, hear our research update, and learn how you can help create a world without Rett. Join Rettsyndrome.org and families for a Virtual Gala this fall. And raise a glass to overpowering Rett! Information & Registration
Oct
31
Sat
11th Annual Florida Strollathon: Virtual Edition
Oct 31 @ 9:00 am

11th Annual Florida Strollathon: Virtual Edition

Join us for the 11th Annual Florida Strollathon- VIRTUALLY! At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we have decided to host this year's Stroll VIRTUALLY. We have some tricks up our sleeve to provide a fun and engaging virtual experience! Date: October, 31st, 2020 Location: your neighborhood, walking trial or treadmill! Event Contact: Jackie Ventura (978-500-2495 or [email protected]) Information & Registration
7th Annual Maine Strollathon: Virtual Edition
Oct 31 @ 9:00 am

7th Annual Maine Strollathon: Virtual Edition

Join us for the 7th Annual Maine Strollathon- VIRTUALLY! At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we have decided to host this year's Stroll VIRTUALLY. We have some tricks up our sleeve to provide a fun and engaging virtual experience! Date: October 31, 2020 Location: your neighborhood, walking trial or treadmill! Stroll Chair: Evie Swan (775-200-8788 or [email protected]) Information & Registration
Nov
7
Sat
8th Annual San Antonio Virtual Strollathon
Nov 7 all-day

8th Annual San Antonio Virtual Strollathon

Join us for the 8th Annual San Antonio Virtual Strollathon!
  • Saturday November 7th, 2020
  • Location: Virtual
  • Event Chair: Ashley Cotham
Information & Registration
Dec
5
Sat
Hannah’s Artshow Reception
Dec 5 @ 2:00 pm

Hannah Grace Carpenter

Artist Reception Date: December 5 Time: 2:00-4:00pm Location: 148 North Main Street, Downtown Historic Mooresville Important Information
Dec
8
Tue
RettEd: What Do They See? Vision in Rett Syndrome
Dec 8 @ 1:00 pm
Join us Tuesday, December 8th, at 1:00 pm (EDT) to hear from Tristen Dinkel, RN about Cortical Visual Impairment (CVI) in Rett syndrome. Our loved ones with Rett syndrome often exhibit particular eye movements or gaze patterns. Is this a motor behavior or visual strategy? What do our children see? How do they process visual information? Register now, and submit your questions. Pre-submitted relevant questions will be addressed, and there will be time for write-in questions during the session. REGISTER Our RettEd Webcasts are Free, but registration is required. RettEd Webcasts are recorded. When you register, you will receive a link to the recording within 1-2 days after the presentation. Rettsyndrome.org is committed to standing with you today, to fighting to transform your tomorrow. Check out our other upcoming webcasts, as well as an incredible library of past webcasts on multiple Rett topics: www.rettsyndrome.org/education.  
Jan
19
Tue
RettEd: How Your Child’s Data is Shaping the Future of Rett Research
Jan 19 @ 1:00 pm
Date: Tuesday, January 19 Time: 1-2:30pm (EST) For the last 16 years, the NIH-funded Natural History Study for Rett Syndrome has been collecting data from over 1000 Rett families. Hear from NHS Principal Investigators, Drs. Alan Percy, Jeffrey Neul, and Eric Marsh on how your data has helped change the management of children and adults with Rett syndrome and improved longevity in those with Rett syndrome. Learn how you can still take part in the NHS before its completion in July 2021. And find out how your participation in the new Rett Clinical Disease Registry, launching in August 2021, will benefit Rett syndrome drug development. Register for FREE, and submit your questions to be addressed during the webinar. Once registered, you will receive a confirmation email containing information about joining the webcast. Information & Registration
Feb
9
Tue
RettEd: Empowering Your Child’s Care Providers
Feb 9 @ 1:00 pm
Join us Tuesday, February 9, 2021, at 1:00 pm EST to learn how you can empower your care team to provide the best quality care for your loved one with Rett syndrome. Dr. Tim Benke from Colorado Children’s Hospital, Katie Hale, NP from Katie’s Clinic at UCSF Oakland, and Melissa Kennedy, Executive Director at Rettsyndrome.org, will unpack the Rett Syndrome Primary Care Guidelines. You’ll learn how to use this evidence-based tool in partnership with your child’s physicians and specialists. The Primary Care Guidelines provides suggested visit schedules by clinical area of assessment, specific concerns to look for, and timelines for follow up appointments. To ensure the best care for your loved one with Rett, join us on February 9 to take a deeper dive. We encourage physicians and health care providers to attend this webinar; invite them to register as well! Information & Registration
Feb
27
Sat
Winter Trivia Fun Night
Feb 27 @ 7:00 pm

Test your trivia knowledge and support Rett syndrome!

Looking for something fun to do this winter while stuck inside and want to support Rettsyndrome.org at the same time? Get your thinking caps on, gather some friends (virtually) and join us for our winter Trivia Night Virtual Showdown fundraiser! Date: Saturday, February 27 Time: 7pm EST Price: $100 (for a group of 10) Details: Space is limited as we are capping out at 20 groups of 10. The ticket purchaser is the 'team captain' and will need to fill out a link after purchasing tickets with the team member names & email addresses. Please direct any questions to Jackie Ventura at [email protected] Information & Registration
Mar
9
Tue
RettEd: Rett Syndrome Communication Guidelines – Real World Application
Mar 9 @ 1:00 pm
Communication is one of Rett syndrome’s biggest challenges. As such, individuals with Rett struggle to connect, build relationships, and make their wishes known. This critical RettEd webcast can help, no matter where a person is on their Rett journey, whether newly diagnosed or an adult who is no longer receiving services. Theresa Bartolotta, PhD, CCC-SLP, along with a speech therapist and parent, will unpack The Communications Guidelines so families, physicians, and caregivers will know how to use this important tool in real-life situations. They’ll share how they’ve implemented its strategies to enhance communication, explain critical information, and answer your questions. Please submit your questions early, and we’ll also take a few during the webcast as time allows. Pre-registration is required. Order the Communication Guidelines handbook today - https://www.rettsyndrome.org/communications-guidelines/ Information & Registration
Apr
13
Tue
RettEd: Let’s Hear It For The Boys! Males with MECP2
Apr 13 @ 1:00 pm
We’ve learned a lot since the ‘80s—and it’s time to set the record straight! Dr. Bernard Suter of Texas Children’s Hospital will share what we know about males with Rett, males with MECP2 duplication, and current and future study options. We’ll also explore why males have not been included in clinical trials so far and if males will be approved for future Rett treatments. Dr. Suter will discuss a new biomarker study specifically for males with MECP2 mutations. Finally, we’ll share how IRSF advocates for males with industry partners. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required. Information & Registration
Apr
23
Fri
RettEd: What Hurts? Part 2: Addressing and Treating Pain in Rett syndrome
Apr 23 @ 1:00 pm
How do parents and caregivers recognize and treat pain in a loved one with Rett, especially if communication is a challenge? This RettEd can help! Dr. Tim Feyma and Dr. Art Beisang of Gillette Children's, and Dr. Scott Schwantes of Children's Minnesota, will address the tools you need to identify pain in your loved one and how to treat their pain. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required. If you missed Pain Part 1 with Univ of MN Researcher Dr. Frank Symons, feel free to View it here prior to April 23rd: https://www.youtube.com/watch?v=XR0uAlsYKmg Information & Registration
Apr
30
Fri
The Great Rett Shootout @ Blackwood Gun Club
Apr 30 all-day
We are excited to be able to host the event this Spring! We will be following the guidelines of the CDC and may have to implement social distancing and face coverings dependent upon the CDC guidelines in place at the end of April. Come out and break some clays with us as we raise money for a very special cause. 100% of all tournament proceeds go to RettSyndrome.org! Experienced and Novice shooters are welcome! Date: April 30, 2021 Details: $750 per 4-man team $200 per individual Mulligan Package: 6 Shots for $25 Carts included, ammunition not included Information & Registration
Jun
15
Tue
RettEd: Bringing Treatments & Cures Home
Jun 15 @ 1:00 pm
The Rett syndrome research landscape has changed significantly over the last 30-40 years. IRSF and our legacy foundations have been instrumental in making breakthrough discoveries and life-changing advancements toward a cure. In this webinar, Dr. Dominique Pichard, IRSF Chief Science Officer, will share how our foundation works toward Rett syndrome treatments and cures for all. You’ll learn how we’re investing in genetic approaches, building a robust pipeline for treatments, and utilizing our Rett syndrome Center of Excellence Network to help get treatments approved for your loved one. Information & Registration
Jul
28
Wed
RettEd: Gene Therapy in Rare Disease
Jul 28 @ 1:00 pm
As a rare disease community, we can learn a lot from others further down the road of gene replacement therapy. In this informative conversation with IRSF's CSO, Dr. Dominique Pichard, you'll hear from P.J. Brooks, PhD, Program Director for the Office of Rare Disease Research at the NIH's Center for Advancing Translational Sciences. We'll also hear from CureSMA's Chief Scientific Officer, Jill Jarecki, PhD, who will share what CureSMA learned from their FDA-approved gene therapy clinical trial experience. Join us Wednesday, July 28 at 1 p.m. EDT. Takeaways from this RettEd: - Understand the potential for gene replacement therapy for single-gene disorders like Rett syndrome and learn what is involved in delivering complex treatment molecules to the affected cell. - Understand what NCATS is doing to accelerate clinical trials in rare diseases by moving beyond "one disease at a time" approaches. - Get perspective from another rare disease foundation's gene therapy clinical trial experience. Information & Registration