Events

Feb
9
Tue
RettEd: Empowering Your Child’s Care Providers
Feb 9 @ 1:00 pm
Join us Tuesday, February 9, 2021, at 1:00 pm EST to learn how you can empower your care team to provide the best quality care for your loved one with Rett syndrome. Dr. Tim Benke from Colorado Children’s Hospital, Katie Hale, NP from Katie’s Clinic at UCSF Oakland, and Melissa Kennedy, Executive Director at Rettsyndrome.org, will unpack the Rett Syndrome Primary Care Guidelines. You’ll learn how to use this evidence-based tool in partnership with your child’s physicians and specialists. The Primary Care Guidelines provides suggested visit schedules by clinical area of assessment, specific concerns to look for, and timelines for follow up appointments. To ensure the best care for your loved one with Rett, join us on February 9 to take a deeper dive. We encourage physicians and health care providers to attend this webinar; invite them to register as well! Information & Registration
Feb
26
Fri
University of Alabama Birmingham Rett Clinic Town Hall Meeting
Feb 26 @ 5:00 pm
Are you wanting to better 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 to re-connect and re-center with your Rett syndrome community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Friday, February 26, 2021, at 4pm -5:30pm Central time. Join us as Rettsyndrome.org, and the Rett Clinic team at UAB discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
Mar
9
Tue
RettEd: Rett Syndrome Communication Guidelines – Real World Application
Mar 9 @ 1:00 pm
Communication is one of Rett syndrome’s biggest challenges. As such, individuals with Rett struggle to connect, build relationships, and make their wishes known. This critical RettEd webcast can help, no matter where a person is on their Rett journey, whether newly diagnosed or an adult who is no longer receiving services. Theresa Bartolotta, PhD, CCC-SLP, along with a speech therapist and parent, will unpack The Communications Guidelines so families, physicians, and caregivers will know how to use this important tool in real-life situations. They’ll share how they’ve implemented its strategies to enhance communication, explain critical information, and answer your questions. Please submit your questions early, and we’ll also take a few during the webcast as time allows. Pre-registration is required. Order the Communication Guidelines handbook today - https://www.rettsyndrome.org/communications-guidelines/ Information & Registration
Apr
13
Tue
RettEd: Let’s Hear It For The Boys! Males with MECP2
Apr 13 @ 1:00 pm
We’ve learned a lot since the ‘80s—and it’s time to set the record straight! Dr. Bernard Suter of Texas Children’s Hospital will share what we know about males with Rett, males with MECP2 duplication, and current and future study options. We’ll also explore why males have not been included in clinical trials so far and if males will be approved for future Rett treatments. Dr. Suter will discuss a new biomarker study specifically for males with MECP2 mutations. Finally, we’ll share how IRSF advocates for males with industry partners. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required. Information & Registration
Apr
23
Fri
RettEd: What Hurts? Part 2: Addressing and Treating Pain in Rett syndrome
Apr 23 @ 1:00 pm
How do parents and caregivers recognize and treat pain in a loved one with Rett, especially if communication is a challenge? This RettEd can help! Dr. Tim Feyma and Dr. Art Beisang of Gillette Children's, and Dr. Scott Schwantes of Children's Minnesota, will address the tools you need to identify pain in your loved one and how to treat their pain. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required. If you missed Pain Part 1 with Univ of MN Researcher Dr. Frank Symons, feel free to View it here prior to April 23rd: https://www.youtube.com/watch?v=XR0uAlsYKmg Information & Registration
May
6
Thu
Rotary Club of Indialantic – Charity Golf Tournament @ Spessard Holland at Melbourne Beach
May 6 @ 9:00 am

Rotary Club of Indialantic - Charity Golf Tournament

Charity Golf Tournament & virtual Gala in support of Rettsyndrome.org. 40% of all proceeds go to Rettsyndrome.org Date: Saturday, May 22, 2021 Course: Spessard Holland at Melbourne Beach Information & Registration
May
10
Mon
8th Annual Charamella Golf Tournament @ Westover Golf Club
May 10 @ 11:00 am
Mark was a devoted husband, father and friend that touched many lives through his enthusiasm and love of life. Every job, school, team or organization that he was involved with became a part of him. He had a great ability to connect with people and shared his passion for life with everyone that he met. As a father of a daughter with Rett syndrome, Mark did everything he could to make her life better. It is in his honor that we gather his family and friends to celebrate a life well lead and to give to a cause that was close to Mark’s heart. To learn more, you may view the brochure here. Join us on Monday, May 10th, 2021 Due to the Covid-19 pandemic, we will be following the CDC guidelines inclusive of masks & social distancing. 11 – 12pm: Golf registration & Lunch 12:30pm: Shotgun Start 5pm: Tailgate, food truck

SIGN UP AS A FOURSOME OR INDIVIDUAL

Registration/Dinner All sponsors will need to provide company logo/artwork via email to Deb McLaughlin [email protected]. All payments & artwork must be received by May 3rd. Sponsorship If you can’t attend the event you can still make a general donation. Donate
Jun
15
Tue
RettEd: Bringing Treatments & Cures Home
Jun 15 @ 1:00 pm
The Rett syndrome research landscape has changed significantly over the last 30-40 years. IRSF and our legacy foundations have been instrumental in making breakthrough discoveries and life-changing advancements toward a cure. In this webinar, Dr. Dominique Pichard, IRSF Chief Science Officer, will share how our foundation works toward Rett syndrome treatments and cures for all. You’ll learn how we’re investing in genetic approaches, building a robust pipeline for treatments, and utilizing our Rett syndrome Center of Excellence Network to help get treatments approved for your loved one. Information & Registration
Jul
13
Tue
Samantha Corpus Golf Tournament
Jul 13 @ 8:00 am
You Can't Miss the Final Samantha Corpus Golf Tournament Samantha's Farewell 15 July 13, 2021 Please join us for the legendary Samantha Corpus Golf Tournament, On Tuesday July 13th at The Blackhawk Country Club, as we will be hosting our 15th and Final Tournament. Due to the Pandemic we had to postpone the tournament last year. In spite of all the uncertainty the outpouring of love and support continued and many of you asked and hoped that we would be able to conclude this epic event in grand style. Information & Registration
Jul
25
Sun
Scramble for a Cure @ Chief Golf Couse
Jul 25 @ 7:30 am

Scramble for a Cure

Date: July 25th, 2021 Details: 18 hole scramble at The Chief Golf Course 7:30am coffee & muffins 8:30am shotgun start Lunch provided by The Pelican's Nest Proceeds go to IRSF Information & Registration
Jul
28
Wed
RettEd: Gene Therapy in Rare Disease
Jul 28 @ 1:00 pm
As a rare disease community, we can learn a lot from others further down the road of gene replacement therapy. In this informative conversation with IRSF's CSO, Dr. Dominique Pichard, you'll hear from P.J. Brooks, PhD, Program Director for the Office of Rare Disease Research at the NIH's Center for Advancing Translational Sciences. We'll also hear from CureSMA's Chief Scientific Officer, Jill Jarecki, PhD, who will share what CureSMA learned from their FDA-approved gene therapy clinical trial experience. Join us Wednesday, July 28 at 1 p.m. EDT. Takeaways from this RettEd: - Understand the potential for gene replacement therapy for single-gene disorders like Rett syndrome and learn what is involved in delivering complex treatment molecules to the affected cell. - Understand what NCATS is doing to accelerate clinical trials in rare diseases by moving beyond "one disease at a time" approaches. - Get perspective from another rare disease foundation's gene therapy clinical trial experience. Information & Registration
Aug
20
Fri
Rip it for Rett
Aug 20 @ 8:00 am

Rip it for Rett

The Rip it for Rett, hockey themed golf tournament is a blast, a great round of golf on a great course with really awesome people. What more can you ask for? Find out the details on how to get in on the fun! Join this sibling group as they raise money for IRSF in honor of their sister! Sponsorships and foursomes are still available. Information Registration & Sponsorships
Sep
22
Wed
RettEd: Partnering with Your Pharmacist: A Spoonful of Ways to Help the Medicine Go Down
Sep 22 @ 1:00 pm
Why should your pharmacist be an active partner in your child's care team? Join us to hear directly from pharmacists who are Rett family members that understand the issues and challenges we face when it comes to getting our loved ones to take their medicine. You'll walk away from this RettEd learning: • How medicines are formulated and why • How to organize your loved one's medication management (especially if they have swallowing issues or a g-tube), • How to improve communication with prescribing doctors • How to get help with securing insurance authorizations, and more! 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
9
Sat
2022 Golf Fore a Cure
Apr 9 @ 7:00 am

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 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
May
9
Mon
9th Annual Charamella Tournament
May 9 @ 11:00 am
Mark was a devoted husband, father and friend that touched many lives through his enthusiasm and love of life. Every job, school, team or organization that he was involved with became a part of him. He had a great ability to connect with people and shared his passion for life with everyone that he met. As a father of a daughter with Rett syndrome, Mark did everything he could to make her life better. It is in his honor that we gather his family and friends to celebrate a life well lead and to give to a cause that was close to Mark’s heart. To learn more, you may view the brochure here. Join us on Monday, May 9th, 2022 11 – 12pm: Golf registration & Lunch 12:30pm: Shotgun Start 5pm: Tailgate, food truck

SIGN UP AS A FOURSOME OR INDIVIDUAL

Registration & Sponsorship All sponsors will need to provide company logo/artwork via email to Deb McLaughlin [email protected]. All payments & artwork must be received by May 2nd. If you can’t attend the event you can still make a general donation. Donate
Jun
10
Fri
Rip it for Rett Golf Tournament
Jun 10 @ 9:00 am
Location: Dunegrass Country Club, 200 Wild Dunes Way, Old Orchard Beach, ME 04064 The Rip it for Rett, hockey themed golf tournament is a fun way to go ALL IN for a cure. Enjoy a great round of golf on a killer course with really awesome people. What more can you ask for? Find out the details on how to get in on the fun! Join this sibling group as they raise money for IRSF in honor of their sister! Register, sponsor or donate here: http://www.ripitforrett.com/
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
Ella Foard Charity Golf Classic @ Providence Country Club
Aug 1 @ 8:00 am – 4:00 pm
Date: Monday, August 1st, 2022 Time: 8 a.m.-4 p.m. ET Location: Providence Country Club (6001 Providence Country Club Dr, Charlotte, NC 28277)

The Ella Foard Foundation hosts the 12th Annual Charity Golf Classic on Monday, August 1st at Providence Country Club! Enjoy an exciting round of golf in a beautiful setting – all for a great cause!

The tournament includes 18 Holes of Captain’s Choice Golf, Coffee & Pastries upon arrival, Lunch and Awards Dinner, Raffles & Goody Bags, Skill (Luck?) Contests, and a Silent Auction!

Information & Registration
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.
Aug
27
Sat
A Day Fore Rett Golf Tournament @ DuBois Country Club
Aug 27 @ 8:00 am
Date: Saturday, August 27th, 2022 Time: Registration 8:00 a.m. ET; Shotgun start 9:00 a.m. ET Location: Dubois Country Club (10 Lakeside Ave, DuBois, PA 15801) Join us August 27th as the Day Family hosts the 1st Annual Day Fore Rett Golf tournament in honor of their daughter, Thea. Valerie and Mike decided to use their passion for golf to get involved and help find a cure for their daughter. A Day Fore Rett features 18 holes along the scenic DuBois Golf Club, a hot dog lunch on the course, prizes and more all to help end Rett. Information & Registration
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
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!
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