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 & RegistrationHannah Grace Carpenter
Artist Reception Date: December 5 Time: 2:00-4:00pm Location: 148 North Main Street, Downtown Historic Mooresville Important InformationTest 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- 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].
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 InformationJoin 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.
- 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!
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.
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 InformationBingo 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- 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.
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 & RegistrationOccupational 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 & RegistrationShop 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].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 RegistrationAPRIL 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