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 2021The 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![](https://www.rettsyndrome.org/wp-content/uploads/Dominique-Pichard_crop-2-150x150.jpg)
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Rev It for Rett Syndrome
In Honor of Maylee Stump
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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.
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- 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!
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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.
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]![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
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!
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![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
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![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
- 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.
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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 & RegistrationNext 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.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 & RegistrationMusic 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 & RegistrationJoin 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
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].![](https://www.rettsyndrome.org/wp-content/uploads/Rett-Syndrome-KGB.png)
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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 RegistrationRUN 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![](https://www.rettsyndrome.org/wp-content/uploads/22-Science-Meeting-Twitter-Post-760x425.png)
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APRIL 29, 2022
Blackwood Sporting Co., 11400 FM2854 Conroe, TX
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.Title Sponsor: Johnson Supply/Armstrong Air
EVENT INFO
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- Friday, April 29th, 2022
- 12:00pm registration / 1:00 tournament
- Blackwood Sporting Co., 11400 FM2854 Rd, Conroe, TX 77304
- Crawfish boil, beverages, live music, raffle, and awards ceremony following the shootout
- Individual awards for 1st, 2nd, and 3rd place, and 1st Overall Team
- Experienced and Novice shooters are welcome!
- $900 per 4-man team
- $250 per individual
- Mulligan Package: 6 Shots for $30
- Carts included, ammunition not included