Events

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
Throw for a Cure
Oct 9 @ 11:00 am

Throw for a Cure

Date: Saturday, October 9th, 2021 Location: Racks Pub 7 Grill 2021 N Black Horse Pike Williamstown, NJ Time: 11:00am Join us for a cornhole tournament benefitting Macie Fordyce and all those who bravely battle Rett syndrome. This fun filled event will have cornhole, a silent auction and prizes! More Information
Oct
16
Sat
Rett Gets Rocked: Noodles & Company Dine Out
Oct 16 all-day
Eat well and do good; support Rett Gets Rocked on Saturday, October 16th, 2021 at Noodles & Company. Whether you dine in or get take out from the Richmond Heights, MO location, 30% of your order will benefit IRSF and the Rett Gets Rocked event. Be sure to show the flyer when ordering to qualify! Noodles & Co: 1624 S Handley Rd, Richmond Heights MO For any questions, contact Jay Murray at [email protected] More Information
2nd Annual South Carolina Strollathon
Oct 16 @ 10:00 am
Join us for the 2nd Annual South Carolina Strollathon! We hope to safely gather in-person this Fall and will keep you updated as the event becomes closer! Fundraising pages now open to create teams & personal pages for the Strollathon. Event Chairs: Stephanie Winckler, Danyell Flowers Follow us on Facebook for more event info & updates. Information & Registration
Oct
19
Tue
Bingo for Rett
Oct 19 @ 6:30 pm

Bingo for Rett

Date: Tuesday, October 19th at 6:30pm Location: Sparks American Legion Hall, 730 4th St, Sparks, NV 89431 Get your bingo cards and markers ready as we play Bingo for Rett this October! Enjoy a fun-filled evening with bingo, dinner, non-alcoholic drinks and dessert. Your ticket also includes two bingo cards to be used for 5 rounds. Information & Registration
Oct
23
Sat
Rett Gets Rocked
Oct 23 – Oct 24 all-day
Be sure to support Jay Murry, avid Rett Racer & supporter as he takes on his 4th Annual Rett Gets Rocked initiative. Over the past three years, nearly $14,000 have been raised—split between IRSF and the Rett Spectrum Clinic at St. Louis Children’s Hospital. Rett Gets Rocked combines Jay’s love for running ultramarathons with the intent to help find a cure for Rett syndrome. In 2021, Jay will run 100 miles and has one other big goal--to help bring a cure of Rett syndrome to those who battle it every day. To support Jay in his efforts, go cheer him on at Wash-U on Sat 10/23 and 10/24. More details can be found at: https://rettracers2021.funraise.org/fundraiser/jay-murry
19th Annual SoCal Strollathon: Virtual Edition
Oct 23 @ 8:00 am
Join us for the 19th Annual SoCal Strollathon! 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.
  • Event Chairs: Sherri Brady
  • Follow us on Facebook for more event info & updates.
Register Donate Sponsor
14th Annual St. Louis Strollathon
Oct 23 @ 10:00 am
Join us for the 14th Annual St. Louis Strollathon Fall 2021! We miss you and can't wait to be together again. We hope to have a live, in-person Stroll on Saturday, October 23rd, 2021- more details to come! Until then, stay safe & be well. Fundraising pages now open to create teams & personal pages for the Strollathon. Event Chairs: Joyce Opinsky, Amy Kreher & Amanda Sommer ([email protected]) Follow us on Facebook for continued updates. Information & Registration
Nov
6
Sat
2nd Annual Raise a Glass for Rett Virtual Gala
Nov 6 @ 8:00 pm

2nd Annual Raise a Glass for Rett Virtual Gala

Date: November 6, 2021 Time: 8:00pm Be inspired by stories from our community, hear from Executive Director Melissa Kennedy and Chief Science Officer Dominique Pichard, learn about the incredible work that the International Rett Syndrome Foundation is doing to accelerate research and empower families, and much more. Before the evening is over, we hope to surpass our goal of $200,000, getting us closer to a world without Rett. You can check our progress here, as fundraising is already underway! Information & Registration
Nov
10
Wed
RettEd: Next Level Nutrition
Nov 10 @ 4:30 pm

Next Level Nutrition

  Getting proper nutrition is especially challenging for those with Rett. The news is always filled with information on special diets, allergies, and food sensitivities, but how do you sift through it? How do you decide what’s best for your loved one with Rett? This interactive webinar with parent panel and dietician expert Suzanne Geerts can help!  Date: Wednesday, November 10, 2021 Time: 4:30pm Registration is free but required. Registration & Information Submit your questions when you register. International Rett Syndrome Foundation's educational programming is made possible through a sponsorship from ACADIA Pharmaceuticals, Taysha Gene Therapies, and Novartis Gene Therapy.
Dec
8
Wed
Retted: Occupational Therapy Strategies: Maximizing Hand Function + Feeding
Dec 8 @ 1:00 pm

Occupational Therapy Strategies: Maximizing Hand Function + Feeding

People with Rett often have difficulty controlling hand movements, which can lead to frustration in using communication devices and participating in adapted recreation and many daily activities. Feeding in Rett patients can also be challenging because of decreased motor skills when chewing and swallowing as well as communication issues in relaying what they want. If you're facing either of these issues, finding a trained therapist who understands Rett is key to creating reasonable goals, managing expectations, and perhaps recovering gains lost during a regressive phase of Rett. Todd Levy and Emily Scott from Children's Hospital of Philadelphia and IRSF Center of Excellence will discuss strategies they've seen work in Rett patients and outline the criteria to look for in finding an occupational therapist that will meet your loved one's needs. Information & Registration
Jan
11
Tue
RettEd: Music Through Our Ears and Our Hands
Jan 11 @ 1:00 pm

Music Through Our Ears and Our Hands

Date: January 11, 2022 Time: 1pm Eastern Time Music Therapy: Neuroscience; Clinical Goals; Practical How-To's We know our children have a strong affiliation to music. They have their favorites. It is often a go-to to calm, focus, or motivate them. Why? In this RettEd, we will hear from professionals and parents about the importance of Music Therapy in Rett syndrome. And how does Music Therapy happen in Rett differently than traditional MT? How might you get it going in your everyday life or through an online music group? You will takeaway this and much more. Information & Registration
Jan
27
Thu
Webinar: Learn About the Externally-Led Patient-Focused Drug Development Meeting for Rett Syndrome
Jan 27 @ 3:00 pm

Join IRSF and RSRT on Tuesday, January  27, 2022 from 3 to 4 pm EST for a community webinar to discuss the upcoming March 11, 2022 Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on Rett syndrome.

Discover why your voice is critical to inform the development and review of new drugs to treat Rett syndrome. Come learn how you can make your voice heard as a participant on March 11th. Learn more about the meeting with guest speakers:
  • Larry Bauer, RN, MS, Sr. Regulatory Drug Expert, Hyman, Phelps, & McNamara, PC
  • James Valentine, JD, MHS, Senior Associate, Hyman, Phelps & McNamara, PC
Register
Feb
27
Sun
Shop for Good: IRSF & Kendra Scott @ Kendra Scott
Feb 27 @ 12:00 pm

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].
Mar
11
Fri
Rett Syndrome Externally-Led Patient Focused Drug Development Meeting
Mar 11 @ 10:00 am – 3:00 pm
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
Apr
9
Sat
2022 Golf Fore a Cure
Apr 9 @ 7:00 am

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
Apr
23
Sat
Run for Rett 2022
Apr 23 @ 8:30 am

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
Apr
26
Tue
2022 IRSF Rett Syndrome Scientific Meeting @ GAYLORD OPRYLAND RESORT & CONVENTION CENTER
Apr 26 – Apr 27 all-day
One of the goals of our Rett Syndrome Scientific Meeting is to bring together researchers studying Rett and related fields in academia, industry, and governmental agencies from around the world. We invite all researchers to participate, discuss the latest in Rett syndrome science, and share their findings in this meeting. IRSF’s Rett Syndrome Scientific Meeting will be held immediately before the main portion of the ASCEND 2022 Rett Syndrome National Family Summit in Nashville, Tennessee. It will consist of both poster and oral presentation sessions focused on basic, translational, and clinical work on Rett syndrome. LEARN MORE & REGISTER
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