Events

Aug
20
Fri
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
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
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
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
Oct
16
Sat
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
23
Sat
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
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
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
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
Apr
27
Wed
ASCEND 2022 Rett Syndrome National Summit @ GAYLORD OPRYLAND RESORT & CONVENTION CENTER
Apr 27 – Apr 30 all-day
We’re gearing up for the ASCEND 2022 Rett Syndrome National Summit in Nashville! GAYLORD OPRYLAND RESORT & CONVENTION CENTER April 27-30, 2022 Designed to unite us as a community, this event will bring together parents, families, clinicians, researchers, and Rett organizations around the world. Together we can overcome the challenges of Rett syndrome and reach the summit of hope and healing–a world without Rett syndrome. Information & Registration
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
24
Sat
Michigan Strollathon @ Drake Sports Park
Sep 24 @ 10:00 am – 1:00 pm
Date: Saturday, September 24th, 2022 Time: 10:00 a.m. - 1 p.m. ET Location: Drake Sports Park (6801 Drake Rd, West Bloomfield Township, MI 48322) Event Chairs: Lisa Fenberg & Kate Ficano (Contact Email) The Michigan Strollathon is back and in-person this Fall! Save the date to join us on Saturday, September 24th for our 13th annual stroll at Drake Sports Park in West Bloomfield Township, MI. REGISTER & MORE INFORMATION Make sure to follow the event on Facebook to stay up to date! The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Nebraska Strollathon @ Yanney Heritage Park (ERC Building)
Sep 24 @ 11:00 am – 2:00 pm
Date: Saturday, September 24th, 2022 Time: 10:00 a.m. - 1 p.m. CT Location: Yanney Heritage Park - ERC Building (2020 W 11th St, Kearney, NE 68845) Event Chairs: Jacy Horst, Megan Ladenburger, & Elly Gullion (Contact Email) The Nebraska Strollathon is back and in-person this Fall! Save the date to join us on Saturday, September 24th for our 11th annual stroll at Yanney Heritage Park in Kearney, NE. REGISTER & MORE INFORMATION Make sure to follow the event on Facebook to stay up to date! The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
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
2
Sun
Minnesota Strollathon @ Environmental Learning Center
Oct 2 @ 2:00 pm – 5:00 pm
Date: Sunday, October 2nd, 2022 Time: 1-4 p.m. CT Location: Environmental Learning Center (13550 Dakota Ave S, Savage, MN 55378) Event Chairs: Mary Kallstrom (Contact Email) The Minnesota Strollathon is back and in-person this Fall! Save the date to WALK N' ROLL with us on Sunday, October 2nd for our 16th annual stroll at the Environmental Learning Center in Savage, MN. REGISTER & MORE INFORMATION Make sure to follow the event on Facebook to stay up to date! The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Oct
8
Sat
Cincinnati Strollathon @ Cincinnati Zoo & Botanical Garden
Oct 8 @ 10:00 am – 2:00 pm
Date: Saturday, October 8th, 2022 Time: 10:00 a.m. ET Location: Cincinnati Zoo & Botanical Garden (3400 Vine St, Cincinnati, OH 45220) Event Chairs: Brittney Gibson and Jen & Jim Magato (Contact Email) The Cincinnati Strollathon is back and in-person this Fall! Save the date to join us on Saturday, October 8th for our 18th annual stroll at the Cincinnati Zoo & Botanical Garden. REGISTER & MORE INFORMATION Make sure to follow the event on Facebook to stay up to date! The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
St. Louis Strollathon @ JCC St. Louis
Oct 8 @ 11:00 am – 2:00 pm
Date: Saturday, October 8th, 2022 Time: 10:00 a.m. CT Location: JCC St. Louis (2 Millstone Campus Drive, St. Louis, MO 63146) Event Chairs: Joyce Opinsky, Amy Kreher, & Amanda Sommer (Contact Email) The St. Louis Strollathon is back and in-person this Fall! Save the date to join us on Saturday, October 8th for our 15th annual stroll at the JCC St. Louis, also benefitting the St. Louis Rett Syndrome Clinic. REGISTER & MORE INFORMATION Make sure to follow the event on Facebook to stay up to date! The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Oct
21
Fri
Rett Spectrum 5th Annual Family Education Symposium @ Washington University School of Medicine
Oct 21 @ 3:00 pm
Date: Friday, October 21, 2022 Time: 3:00 p.m. CT (entry in-person/zoom at 2:45p) Location: Washington University School of Medicine (660 S Euclid Ave, St. Louis, MO 63110) INFORMATION & REGISTRATION
Oct
22
Sat
IRSF RettEd Day at Kennedy Krieger Institute @ Kennedy Krieger Institute
Oct 22 @ 8:00 am – 4:00 pm
Date: October 22, 2022 Time: 8:00 a.m. - 4 p.m. Eastern Time Location: Kennedy Krieger Institute's Arnold J. Capute, MD, MPH Conference Center – Eighth Floor (1741 Ashland Avenue, Baltimore, MD 21205) Our RettEd Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more. REGISTRATION & INFORMATION Make sure to follow the event on Facebook to stay up to date!
So Cal Strollathon @ Whittier High School
Oct 22 @ 3:00 pm – 7:00 pm
Date: Saturday, October 22nd, 2022 Time: 12-4 p.m. PT Location: Whittier High School (12417 Philadelphia St, Whittier, CA 90601) Event Chair: Sherri Brady (Contact Email) The So Cal Strollathon is back and in-person this Fall! Save the date to join us on Saturday, October 22nd for our 20th annual stroll at Whittier High School. REGISTER & MORE INFORMATION Make sure to follow the event on Facebook to stay up to date! The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Oct
30
Sun
Dallas Strollathon @ Gussie Field Watterworth Park
Oct 30 @ 2:00 pm – 5:00 pm
Date: Sunday, October 30th, 2022 Time: 1:00 p.m. - 4 p.m. Central Location: Gussie Field Watterworth Park (2610 Valley View Ln, Farmers Branch, TX 75234) Event Chairs: Vanessa Peace  (Contact Email) REGISTER & MORE INFORMATION The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Nov
5
Sat
Florida Strollathon @ Tradewinds Park
Nov 5 @ 9:30 am
Date: Saturday, November 5, 2022 Time: 9:30 a.m. ET Location: Tradewinds Park, Grandiosa Shelter (3600 W. Sample Rd, Coconut Creek, FL 33073) Event Chair: Henry Perez (Contact Email) REGISTER & MORE INFORMATION Make sure to follow the event on Facebook to stay up to date! The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
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.
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