Aug
27
Tue
Sarika Peters, PhD, , Assoc. Professor of Pediatrics and Psychiatry & Behavioral Sciences, Vanderbilt Kennedy Center Marie Bateh, Physical Therapist and parent will explore specific domains as a framework to consider important issues and creative options for taking care of ourselves to ensure we have the energy, mindset and health needed to care for our loved one with Rett syndrome. Our goal is to help you frame an empowered life for yourself today, while we pursue our collective Hope for better treatments and ultimately a cure for Rett syndrome. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Visit www.rettsyndrome.org/RettEd for additional 2019 webcast topics, and to access recording links from past webcasts and associated QA documents. RettEd is a monthly series featuring expert Speakers on Rett-related research and care topics, hosted by Rettsyndrome.org, to help pave your personal pathway to empowerment. Registration & Information
Categories: Education Slider Webasts
Sep
27
Fri
The program will have lectures from international experts. Subjects include epilepsy, learning and communication, physiotherapy and other rehabilitation, nutrition, sleep and neurological problems. The purpose of Rett Finland is to support families with Rett's syndrome diagnosed child. The Association has about 100 members. For more information on the association's activities, visit the association's website at www.rettfinland.fi and on Facebook www.facebook.com/Rett-Finland Registration & Information
Categories: Special Events - Meetings/Symposiums
Sep
28
Sat
The program will have lectures from international experts. Subjects include epilepsy, learning and communication, physiotherapy and other rehabilitation, nutrition, sleep and neurological problems. The purpose of Rett Finland is to support families with Rett's syndrome diagnosed child. The Association has about 100 members. For more information on the association's activities, visit the association's website at www.rettfinland.fi and on Facebook www.facebook.com/Rett-Finland Registration & Information
Categories: Special Events - Meetings/Symposiums
Oct
24
Thu
Oct 24 @ 9:00 am
WHEN | Thursday, October 24th, 2019 TIME | 9:00am WHERE | Monmouth University: Directions | Website Registration Information
Dec
10
Tue
Please join us as Tim Benke, MD PhD, Director, Rett syndrome Clinic, Children's Hospital Colorado, and Rettsyndrome.org Medical Advisor and Paige Nues, Director of Family Empowerment at Rettsyndrome.org to explore the clinical trials landscape outlook for 2020. This live webcast will be especially helpful to caregivers who are wondering if participating in a clinical trial could be an option for their family and how to become research-ready. We will discuss what clinical trials are enrolling, about to enroll, or have closed enrollment. We will also discuss enrollment criteria, what it means to participate in a trial, and hear from a panelist of parent trailblazers whose children have participated in a Rett syndrome clinical trial to hear how they did it. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. RettEd Webcasts are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
Categories: Education Slider Webasts
Jun
18
Thu
RettGetAway: Postponed
After much consideration, our RettGetAway committee has decided to postpone the June 2020 RettGetAway in San Diego. The health of our children is of utmost concern. Once it is deemed safe and sound to convene large groups in public spaces again, we will evaluate a future Rett GetAway. Many were working to create this ‘life without limits’ opportunity. A special thanks to the Kayla Mosca Foundation, Surfing Madonna, Surfin’ Fire, Merlin’s Magic Wand in association with Legoland San Diego, The Cassara Carlsbad by Hilton, our CA State Rep Sherri Brady, and ACADIA Pharmaceuticals. We hope that all of our families and partners emerge from this situation whole, intact, and able to plan an even more extraordinary RettGetAway! If you have made any travel bookings for the RettGetAway, we advise you to cancel them now while forgivable and with no penalty. Rettsyndrome.org will be returning the group Legoland tickets awarded by Merlin’s Magic Wand so that a future award can be made again to either our group or to individuals who may choose to apply at another time (they only allow one Magical Day Out per family, one time) We appreciate your understanding, and we hope that you all stay healthy and safe. Please direct any questions to Paige Nues at [email protected] or Jennifer Mosca at [email protected] LEARN MOREAug
11
Tue
Aug 11 @ 1:00 pm
Please join us Tuesday, August 11, 2020 at 1:00 pm Eastern Time (New York) with Dr. Frank Symons, Associate Dean for Research and Policy, Department of Psychology, and the Center for Neurobehavioral Development at the University of Minnesota as we discuss issues of pain in Rett syndrome. Rett syndrome is a complex disorder, and sharing of accurate information is more than empowering, it can be life-saving for our children with Rett syndrome. So join this webinar to learn the facts. Even though the topic is difficult to talk about, we know you think about it. In terms of pain, Dr. Symons' areas of specific research include (a) the reliable and valid assessment of pain in children and adults with significant communicative and motor impairments; (b) the relation between behavioral and biological variables as markers for altered pain; (c) modifying/adapting sensory testing; and (d) the relation between pain and problem behavior, specifically self-injury. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Categories: Education Slider Webasts Webinar
Oct
13
Tue
Please join Rettsyndrome.org on Tuesday, October 13, 2020 at 1:00pm Eastern Time (New York) for status updates on clinical trial and research enrollment opportunities in the U.S. Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone. Join this webinar to learn how we all have a role to play in research progress. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Categories: Education Slider Webasts Webinar
Dec
5
Sat
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 & Registration Categories: Special Events - Meetings/Symposiums
Dec
8
Tue
Join us Tuesday, December 8th, at 1:00 pm (EDT) to hear from Tristen Dinkel, RN about Cortical Visual Impairment (CVI) in Rett syndrome. Our loved ones with Rett syndrome often exhibit particular eye movements or gaze patterns. Is this a motor behavior or visual strategy? What do our children see? How do they process visual information? Register now, and submit your questions. Pre-submitted relevant questions will be addressed, and there will be time for write-in questions during the session. REGISTER Our RettEd Webcasts are Free, but registration is required. RettEd Webcasts are recorded. When you register, you will receive a link to the recording within 1-2 days after the presentation. Rettsyndrome.org is committed to standing with you today, to fighting to transform your tomorrow. Check out our other upcoming webcasts, as well as an incredible library of past webcasts on multiple Rett topics: www.rettsyndrome.org/education.
Categories: Education Slider Webasts Webinar
Feb
26
Fri
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
Categories: Special Events - Meetings/Symposiums
Jul
28
Wed
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
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].
Categories: Special Events - Non-Fundraising Events
Dec
8
Wed
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 & RegistrationMar
11
Fri
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
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
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
Apr
28
Fri
Date: Friday, April 28, 2023 Time: 12 p.m. Registration | 1:00 p.m. Event Start Location: Blackwood Sporting Co. (11400 FM 2854 Rd, Conroe TX 77304) 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. INFORMATION & REGISTRATION
Categories: homepage Special Events - General
Apr
29
Sat
Date: Saturday, April 29, 2023 Time: 5-10 p.m. CT Location: The Farehouse Market (600 W Chicago Ave, Chicago, IL 60654) We're excited to be back at The Farehouse Market for a night of food & drink, a live and silent auction, and the chance to help us celebrate Cammy's 14th Birthday! INFORMATION & REGISTRATION
May
8
Mon
Date: Monday, May 8, 2023 Time: Registration 11:00 am | Shotgun Start 12:15 pm | Tailgate & Dinner 5 pm Location:Westover Country Club (401 South Schuykill Ave, Jeffersonville, PA 19403) Join us for the 10th annual Mark Charamella Memorial Golf Outing & Dinner! "This will be the 10th year of hosting the Mark Charamella Memorial Golf Outing & Dinner. I know that my Dad would be so proud of his family, friends, and colleagues who come from near and far to join us year after year to raise money for Rett syndrome. Each year, when we gather for a fun day on the golf course, I definitely feel his presence and know this is exactly what he would want us to be doing. Please join us for our 10th year and our goal of raising $35,000 in honor of a great man!” - Deb McLaughlin, Event Chair, daughter to Mark and sister to Deirdre By participating in this tournament, you can hit the links to create a world without Rett for Deirdre and for many others. INFORMATION & REGISTRATION
Categories: homepage Special Events - Golf Tournaments
May
23
Tue
Date: Tuesday, May 23, 2023 Time: 1-2 p.m. ET INFORMATION & REGISTRATION In March our community celebrated a first for Rett: trofinetide, now known commercially in the US as DAYBUE™, became the first-ever FDA-approved treatment for Rett syndrome. This approval was the culmination of a journey that began more than a decade ago and succeeded only thanks to the perseverance and commitment of the researchers and families who participated in every stage of the clinical trials. During this 1-hour live webcast, join IRSF and a panel of physicians who treat individuals with Rett syndrome. As principal investigators for the trials, our panel has firsthand knowledge of the potential benefits and side effects of trofinetide. They'll answer your pre-submitted questions, share their anecdotal learnings, and provide information important for any parent considering DAYBUE for their child. Our Panelists:
- Dr. Tim Benke, Professor of Pediatrics, Pharmacology, & Neurology at the University of Colorado/Children's Hospital Colorado
- Dr. Robin Ryther, Director of the Rett Spectrum Clinic at Washington University School of Medicine
Categories: Education Slider homepage
Jun
9
Fri
Date: Friday, June 9th, 2023 Location: Dunegrass Golf Club (200 Old Dunes Way, Old Orchard Beach, ME 04064) Time: 7 a.m. Registration | 8 a.m. Scramble The Rip it for Rett, hockey themed golf tournament is a blast (if we do say so ourselves), 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! INFORMATION & REGISTRATION
Categories: homepage Special Events - Golf Tournaments
Jul
15
Sat
Date: Saturday, July 15, 2023 Time: 12-4 p.m. (Check-in 12p, POUND 1p, Happy Hour 2-4p) Location: IBEW Local 1 (5850 Elizabeth Ave, St Louis, MO 63110) Channel your inner rockstar in POUND® - an exhilarating full body workout inspired by the infectious, energizing, and sweat-dripping fun of playing the drums. Designed for all fitness levels and easily modifiable, POUND® provides the perfect atmosphere for rockstars of all ages and abilities to let loose! Come rock out workout, enjoy refreshments, vendors, a silent auction, and more! INFORMATION & REGISTRATION
Categories: homepage Special Events - General
Aug
5
Sat
Date: Saturday, August 5, 2023 Time: 9:30 a.m. - 4 p.m. PT Location: Camp Arroyo (5535 Arroyo Rd, Livermore, CA 94550) 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. REGISTER & MORE INFORMATION
Categories: Ed Day Education Slider homepage
Sep
9
Sat
The Morrison Family is hosting a pig raffle fundraiser in honor of their daughter, Savannah, who has Rett syndrome. Each prize is for half of a processed pig! Two prizes are available, and one person can win both prizes. Tickets are now available for purchase and the drawing will be hosted on Saturday, September 9th. *Must be located within 180 miles of Dragoon, AZ for local delivery. Outside of that range, winner(s) must be willing to pick up. Should winner choose to donate back the meat, an additional winner(s) will be drawn. MORE INFORMATION Please direct any questions to Sarah & Lonnie Morrison: Sarah: 206-947-0176 Lonnie: 520-507-1593
Categories: homepage Special Events - General
Sep 9 @ 9:00 am – 5:00 pm
Date: Saturday, September 9, 2023 Time: 9:00 a.m. - 5 p.m. CT (registration opens at 8:30a) Location: Rett Syndrome & Related Disorders Clinic (Dallas, TX) 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. REGISTER & MORE INFORMATION
Categories: Ed Day Education Slider homepage
Date: Saturday, September 9, 2023 Time: 10:00 a.m. - 2 p.m. Eastern Location: Buffalo Creek Nature Park (154 Monroe Road, Sarver, PA 16055) Event Chairs: Terre Gray and Kati Gray (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.
Categories: homepage Special Events - Strollathons
Date: Saturday, September 9th, 2023 Time: 1:00 p.m. - 4 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) 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.
Categories: homepage Special Events - Strollathons
Sep
23
Sat
Date: Saturday, September 23, 2023 Time: 10:00 a.m. - 1 p.m. ET Location: Makino Park (6100 Kopfler Ct, Mason, OH 45040) REGISTER & MORE INFORMATION IRSF’s RettConnect is a free picnic and outing for families to build connections with other members of the Tristate Rett syndrome community. Registration is free but required.
Date: Saturday, September 23, 2023 Time: 10:00 a.m. - 1 p.m. Eastern Location: Crowder County Park (4709 Ten-Ten Road, Apex, NC 27539) Event Chairs: Gwen Noecker (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.
Categories: homepage Special Events - Strollathons
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