Events

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
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
Jun
4
Sat
IRSF’s 3rd Annual Virtual Summer 5K
Jun 4 all-day
IRSF's 3rd Annual Virtual Summer 5K

The Virtual Summer 5K is back this June!

Join our community around the world right from your local neighborhood, trail, or treadmill. Whether you run, walk, or stroll, you'll be going ALL IN for a cure!

Why Lace Up for Rett?

  1. It raises money for Rett syndrome research. Once you raise $200, we'll send you a Rett Racer t-shirt.
  2. It unites us as a community. Share your photos on race day to our Facebook Event Page or your personal fundraising page. Use the hashtag #rettracers.
  3. It's FUN! Whether you're a seasoned runner or on a stroll with your family, everyone can join in on the fun - anywhere and at any time!

THE DETAILS Saturday, June 4th, 2022 Anywhere you are! No registration fee; however, fundraising is encouraged

Contact Jackie Ventura at [email protected] with questions.

SIGN-UP OR LEARN MORE
Jul
26
Tue
RettEd | Transitioning into Adulthood, Part 1: Medical Transition
Jul 26 @ 1:00 pm – 2:00 pm

Date: July 26, 2022 Time: 1-2 p.m. Eastern Time The first in a 3-part series on topics pertaining to adulthood in Rett syndrome, this session will provide strategies and resources to empower and prepare you and your young adult for the transition from pediatric to adult medical care. Medical transition is not a one-size-fits-all process, and this workshop-style talk will empower your family to have the best, most family-centered transition of care possible. The session will include stories from other caregivers and individuals in the Rett community and further expand on topics and questions from the session at IRSF’s ASCEND 2022 Rett Syndrome National Summit. Speakers: Jessica Nickrand is a program manager at the Child Neurology Foundation (CNF). She supports CNF’s Transition of Care Program—its largest and most diverse program—which helps to support youth, families, and child neurology teams in the medical transition. Jessica holds a Ph.D. from the University of Minnesota and is passionate about developing programs that empower young adults and their caregivers to effect systems-level change.  Paige Nues is the Director of Family Empowerment for the International Rett Syndrome Foundation (IRSF). Since her daughter, Katie’s diagnosis of Rett syndrome in 2003, Paige has worked diligently to build bridges between patient families, clinicians, scientists, and industry, both at IRSF and as a parent founder of Katie’s Clinic for Rett and Related Disorders at UCSF Benioff Children’s Hospital. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome. INFORMATION & REGISTRATION Medical Disclaimer: All information, content, and material provided in this webcast is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
Aug
1
Mon
RettEd | What Comes Next? The FDA Regulatory Process from NDA to FDA Decision and Beyond
Aug 1 @ 3:00 pm – 4:00 pm
Date: Monday, August 1st, 2022 Time: 3 p.m. EDT With the recent news about trofinetide’s new drug application (NDA) submitted to the FDA, we are entering a new space for Rett syndrome: FDA Review. While this is the first time for Rett, it won’t be the last, and our community has a lot of great questions: “What does submitting an NDA mean? What’s the next step? How much longer? When will we have an approved treatment? How will my loved one get access to this treatment?” To answer these questions and many more, IRSF is excited to bring back FDA expert, James Valentine, Esq., to join IRSF’s Chief Science Officer, Dr. Dominique Pichard for a live webinar. Join them as they review the FDA regulatory process, share what happens between a successful Phase 3 clinical trial and an FDA decision about a drug or therapeutic, and explain what could come next for trofinetide and the Rett community. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome. INFORMATION & REGISTRATION Medical Disclaimer: All information, content, and material provided in this webcast is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
Sep
27
Tue
RettEd Webinar | Transitioning into Adulthood, Part 2: Lifecare Planning
Sep 27 @ 1:00 pm – 2:00 pm
Date: September 27, 2022 Time: 1-2 p.m. Eastern Time The second in our 3-part series on topics pertaining to adulthood in Rett, this online workshop focuses on preparing for life post-high school when school services and support conclude. Geared for parents, guardians, and family members of the older teen and adult with Rett syndrome, this session will cover:
  • Legal Planning: Special Needs Trusts, Letter/Memorandum of Intent, Guardianship
  • Financial Planning: How to fund a Special Needs Trust, ABLE accounts, and more
  • Benefit Planning: Finding and accessing federal benefits like SSI & SSDI, Medicaid, Waivers, etc.
  • Defining Your Replacement Team: What happens when you can no longer provide direct care alone?
Speaker: Kacy Seitz is a financial planner with a Northwestern Mutual practice that serves nearly 500 special needs families in 28 states. As a special needs parent to 12-year-old Hudsyn (a friend of Samantha Brant’s daughter, Macy!), Kacy is all-too-familiar with the common fears you may have in learning about the topic of long-term planning for your child. In fact, she opened her practice in 2013 because she had difficulty finding good, sound advice to help her develop a solid plan for her daughter. Now, Kacy has personally trained and mentored hundreds of other advisors on how to do this type of planning for their clients, focusing on helping special needs families with proper financial planning throughout their lifetimes. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome. INFORMATION & REGISTRATION Medical Disclaimer: All information, content, and material provided in this webcast is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
Oct
15
Sat
Bee The Light 5K @ Southeastway Park
Oct 15 @ 9:00 am
Date: Saturday, October 15th, 2022 Time: 9am-12pm ET Address: Southeastway Park, 5624 S. Carroll Rd, New Palestine, IN 46163 Register and Learn More Event Info: A great opportunity to run or walk in the cool fall weather, the Bee the Light 5K is the first annual race sponsored by The Shelby Foundation for Kindness Delivered. This exciting event on a paved trail will highlight the family-friendly environment of Southeastway Park which also includes bike trails, a playground, shelters, an education center, wooded areas, and a pond. This race is held in honor of Shelby Kraft, who passed away in early 2022, and 100% of registration proceeds will be donated to the International Rett Syndrome Foundation. Rett Syndrome is a neurologic disorder, primarily affecting girls and women, which can lead to significant disability. Shelby is also the namesake of Kindness Delivered, an organization that delivers kindness in Jesus' name throughout the community. For more information on Shelby and Kindness Delivered, visit kindnessdelivered.org.
Dec
6
Tue
RettEd Webinar | Transitioning into Adulthood, Part 3
Dec 6 @ 1:00 pm – 2:00 pm
Date: December 6, 2022 Time: 1-2 pm ET INFORMATION & REGISTRATION Quality of Life Options by Real-Life Families Every individual with Rett syndrome is unique and while our paths may be similar, no family’s Rett journey is the same. This is especially true as our children grow into adults; while they don’t outgrow their need for us, there is no one ideal or specific policy roadmap to help navigate our loved ones’ Rett journey into adulthood. But with proper planning, goals, and vision, we can ensure this journey leads to an enriched adulthood. In the 3rd talk in our 3-part series on navigating adulthood in Rett syndrome, join us for a candid conversation with families who have navigated this process to provide the best quality of care, constructing meaningful lives for their adult loved ones while caring for themselves too. Learn about what you need to change, what needs to be secured, and what creative living and life options are out there for your adult with Rett syndrome from families who have been through this before. The panel includes:
  • Paul and Janelle Jochim, parents to Jill (age 46)
  • Megan Ladenburger and Mom Shanna Sowers, sister and mom to Brittany (age 34)
  • Theresa Bartolotta, mom to Lisa (age 33)
  • Moderator: Paige Nues, IRSF Family Empowerment Director and mom to Katie (age 20)
  • Special Guest: Sheila Lullo, Special Projects Coordinator of Quality Outcomes at Clearbrook in Illinois, a provider of community-based residential options, day programs, and more to adult individuals with special needs.
Join us for the webinar as our panel shares their real-life experiences and the process they went through in choosing Day Programs, Self-Directed Programming, Residential Care, and more. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome. Medical Disclaimer: All information, content, and material provided in this webcast is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
Apr
22
Sat
Run for Rett 2023 @ Busse Woods - North, Grove #28
Apr 22 @ 7:00 am
Date: Saturday, April 22, 2023 Time: 7 a.m. Registration | 8:30 a.m. 5K | 9 a.m. 1-Mile Fun Run Location: Due to circumstances beyond our control, we are moving the Run For Rett to Busse Woods North, Grove #28. It is the same location used in prior years.  Enter Busse Woods 1 block east of Route 53 on Golf Rd.  All other details remain the same. From the serious runner to the recreational runner to family members and friends of all ages, the Run For Rett is an event you don’t want to miss. Make a difference in the life of those affected by Rett syndrome and join us for the Run For Rett 5K Run/Walk & 1 Mile Fun Run. *First 200 participants receive an official Run For Rett t-shirt* INFORMATION & REGISTRATION
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