Events

Dec
5
Sat
Vanderbilt Kennedy Center Rett Clinic Town Hall Meeting
Dec 5 @ 12:00 pm

Vanderbilt Kennedy Center Rett Clinic Town Hall Meeting

Date: Sat, December 5, 2020 Time: 11:00 AM - 12:30 PM Are you wanting to understand the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? Perhaps you would like an opportunity to re-connect and re-center with your Rett community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Saturday, December 5, 2020, at 11am -12:30pm (CT). Join us as Rettsyndrome.org, and the Rett Clinic team at Vanderbilt Kennedy Center discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
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
Montefiore Rett Clinic Town Hall Meeting
Dec 5 @ 3:00 pm

Tri-State Rett Syndrome Center Children's Hospital at Montefiore Town Hall, feat. Dr. Djukic & More

Date: Sat, Dec 5, 2020 Time: 3:00 PM - 4:30 PM Are you having difficulty understanding the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Saturday, December 5, 2020, at 3pm -4:30pm (ET). Join us as Rettsyndrome.org, and the Rett Clinic team at Children's Hospital at Montefiore discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
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
26
Fri
University of Alabama Birmingham Rett Clinic Town Hall Meeting
Feb 26 @ 5:00 pm
Are you wanting to better understand the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? Perhaps you would like to re-connect and re-center with your Rett syndrome community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Friday, February 26, 2021, at 4pm -5:30pm Central time. Join us as Rettsyndrome.org, and the Rett Clinic team at UAB discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. 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
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
8
Sat
Run for Rett
May 8 – May 16 all-day

Run for Rett

WE ARE GOING VIRTUAL AGAIN!!!

When: Saturday, May 8th - Sunday, May 16th Where: Any time and any place Our responsibility is to the health and well being of our participants and volunteers for the Run For Rett. The decision to change to a virtual event was thoughtfully made with extreme concern for our entire Rett syndrome community and our dedicated participants and volunteers. Thank you for your understanding, cooperation and support. How you participate is totally up to you. You can run the 5K, walk a mile or sit in your recliner. No matter what you choose you are a winner because you are making a difference in the lives of those impacted by Rett syndrome. We encourage you to register online. It’s easy to register at Raceroster.com/46429 Follow us on Facebook: Click here - Run Rett 2021
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
Jun
5
Sat
RETT RACERS VIRTUAL SUMMER 5K
Jun 5 @ 10:00 am

The 2nd Annual Summer Virtual 5K is Back!

Date: June 5, 2021 Join our community around the world by lacing up your shoes and hitting your local neighborhood, trail (social distancing required), or treadmill. Run, walk, skip, or stroll to end Rett syndrome! No registration fee; however, fundraising is encouraged. Once $200 has been raised, we will send you a Rett Racer t-shirt. Share your photos on race day to our Facebook event or your personal fundraising page! Use the hashtag #rettracers. 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
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
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
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
Sep
1
Wed
19th Annual SoCal Virtual Strollathon
Sep 1 @ 8:00 am
Join us virtually this Fall as you Stroll in your neighborhood or host a picnic to help overpower Rett. We will host a live event via Zoom on Saturday, October 23rd, 2021 at 12 noon PST. Please check back soon for more details. Fundraising pages now open to create teams & personal pages for the virtual Strollathon. Register Donate Sponsor
Sep
12
Sun
Rev It for Rett Syndrome @ Legacy 925
Sep 12 @ 1:00 pm

Rev It for Rett Syndrome

In Honor of Maylee Stump

Date: Saturday, September 12th Time: 1pm-8pm Location: Legacy 925 925 North Lapeer Td. Oxford, MI Details: Car show, 925 Social Bar & Food Trucks, Urban Air, K1 Speed, Silent Auction Contact: Cole Landau ([email protected]) More Information
Sep
19
Sun
10th Annual Nebraska Strollathon
Sep 19 @ 10:00 am

Join us for the 10th Annual Nebraska Strollathon!

Important Update: Due to the Covid-19 pandemic, we have decided to host the event virtually this year! We care about the health of you and your family and hope to be able to gather back in person in 2022.

You can participate virtually in the following ways:

  • Create your fundraising page & teams to help us reach our goal.
  • Purchase a Strollathon t-shirt; shopping link coming soon!
  • Stroll in your own community on Sunday 9/19- be creative! Decorate wheelchairs, cars, etc!
  • Participate in our online auction; coming early September.
  • Join our Zoom call on Sunday 9/19 at 10am CST: link coming soon.
Information & Registration
Sep
22
Wed
RettEd: Partnering with Your Pharmacist: A Spoonful of Ways to Help the Medicine Go Down
Sep 22 @ 1:00 pm
Why should your pharmacist be an active partner in your child's care team? Join us to hear directly from pharmacists who are Rett family members that understand the issues and challenges we face when it comes to getting our loved ones to take their medicine. You'll walk away from this RettEd learning: • How medicines are formulated and why • How to organize your loved one's medication management (especially if they have swallowing issues or a g-tube), • How to improve communication with prescribing doctors • How to get help with securing insurance authorizations, and more! Information & Registration
Sep
25
Sat
18th Annual Cincinnati Strollathon: Virtual Edition
Sep 25 @ 8:00 am
Join us for the 18th Annual Cincinnati Strollathon; VIRTUAL EDITION! We have made the difficult decision to host this year's event VIRTUALLY. We miss you all and can't wait to gather in person again. In the meantime, help us have a great virtual event by participating in a way that works for you!
  • Fundraising pages are now open to create teams and help us overpower Rett.
  • On Saturday, Sept 25th, plan to Stroll your way. Stroll your local neighborhood; decorate your car and drive around town to spread awareness!
  • Consider asking your school or employer to have a special day to wear purple and collect donations!
  • Event Chairs: Jen & Jim Magato ([email protected]) and Brittney Gibson ([email protected])
  • Follow us on Facebook for continued updates & more fun!
Register Donate Sponsor
Oct
3
Sun
15th Annual Minnesota Strollathon
Oct 3 @ 10:00 am

We have made the difficult decision to make this year's event VIRTUAL. We miss you and can't wait to be together again. In the meantime, help us have a great virtual event to help overpower Rett!

  • Fundraising pages now open to create teams & personal pages for the Strollathon.
  • On Sunday, 10/3, plan to Stroll in your own communities. Get creative; decorate your car, wheelchairs, bikes, etc to help raise awareness for Rett!
  • We will be hosting an online auction opening in late September; check back soon.
Information & Registration
Oct
9
Sat
Run for Rett 5K
Oct 9 @ 7:00 am

2nd Annual Run for Rett 5k

Date: Saturday, October 9th, 2021 Location: Bradenton, FL We are very excited to have the Second Annual Run for Rett 5K to help spread awareness about Rett Syndrome. This year plans to be quite exciting with donations going to International Rett Syndrome Foundation as well the We Carry Kevan crew here to help any families who would like to join in the area with a child afflicted with Rett Syndrome. There will be food, prizes, and much more! Registration Make a Donation You can also check out our Facebook event for more information: https://www.facebook.com/events/261650685291726 Please direct any questions to event chair, Artie Phillips at [email protected]
5th Annual Virtual Iowa Strollathon
Oct 9 @ 10:00 am

Cheers to 5 years of the Iowa Stroll!

We are so excited to share that the 5th Annual Iowa Strollathon will be happening this year and we have so many fun ways for you to join in! Due to the Covid-19 pandemic, we have decided to get a little creative in order to continue the momentum to raise funds & awareness to get us one day closer to a world without Rett! This year, we are encouraging you to Stroll your own way- this can be ANYTHING you think of. Some examples could include; a t-shirt fundraiser, a neighborhood Stroll, a garage sale, chili cook-off competition….you name it and you can turn it into a way to raise funds & awareness for Rett. We are here to help you with whatever you come up with and there may be a prize for most creative Stroll .

We will be working hard to make this a fun & engaging experience.

Be sure to follow us on Facebook for exciting updates!

  • We plan to host a small celebration on Saturday, October 9th for Rett families at Kinzler Construction from 12pm-2pm. Invitations will be sent to families via email & postcard.
  • All others are asked to celebrate virtually on 10/09 by Strolling in your own neighborhoods, parks, etc!
Information & Registration