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- 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].
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.
- 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!
- 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.
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.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