Events

Nov
9
Sat
Reach for a Cure: Houston
Nov 9 @ 7:00 pm
Be a part of our Inaugural Boots & Bling Rett Gala!
Saturday, November 9th, 2019
Firehouse Saloon 5930 Southwest Freeway, Houston, TX 77057
6:00 p.m. VIP reception for Rett Families & Sponsors 6:30 p.m. Doors open to public
We're excited to invite you to Houston's very first Reach for a Cure - Boots & Bling Rett Gala benefitting Rettsyndrome.org. This entertaining event is designed to raise funds for a cure for Rett syndrome while having lots of fun at the same time. Get dolled up, but don't forget your boots! This honky-tonk is going to rattle with special musical guests Coleton Black,  Chubby Knuckle Choir and Pauline Reese. We'll also have a live and silent auction full of great items – perfect time to get holiday gifts, or something for yourself! Registration & Sponsorship View Sponsorship Opportunities All proceeds from sponsorships, donations, and tickets goes to Rettsyndrome.org, the longest-standing Rett syndrome research and family empowerment organization.
Nov
12
Tue
RettEd: Orthopedics: A Focus on Scoliosis and Hips
Nov 12 @ 1:00 pm
Please join us as we speak to an orthopedic expert in neuromuscular scoliosis and developmental hip dysplasia. We will discuss how and when these typically occur in Rett syndrome, and what we can do about 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 Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
Nov
15
Fri
Find a Cure: Pop-up Event
Nov 15 @ 6:00 pm

Find a Cure

a one night pop-up event with art by Cecily Miniaci

Date: November 15, 2019 Time: 6-9PM Location: 701 Broadway Blvd, Kansas City, MO Local Kansas City artist, Cecily Miniaci, will be doing a pop up art event downtown at Roasters Block on November 15th from 6-9pm with a portion of the proceeds benefiting rettsyndrome.org. Information & Registration
Dec
7
Sat
Hannah’s Art Show
Dec 7 @ 2:00 pm

Hannah's Art Show

Save the Date for Hannah's Art Show. There will be note cards, prints, and original paintings for sale to benefit Rettsyndrome.org. Date: December 7, 2019 Time: 2-4pm Location: Four Corners Framing Gallery Contact Information: Trisha Carpenter Email: [email protected]
Dec
10
Tue
RettEd: Clinical Trial Enrollment Opportunities and Status Update
Dec 10 @ 1:00 pm
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
Jan
7
Tue
RettEd in Spanish: ¿Qué es el síndrome de Rett?
Jan 7 @ 1:00 pm
Please join us Tuesday, January 7, 2020 at 1:00 pm eastern for a presentation in Spanish from our bilingual Rett syndrome expert neurologist Dr. Mario Petersen, Section Chief, Neurodevelopmental Pediatrics and Endowed Chair, The Gerber Center for Infant Development and Nutrition, at Helen DeVos Children's Hospital in Grand Rapids, MI, and recent past Medical Director of the Rett Syndrome clinic at Oregon Health Sciences University. We will discuss ¿Qué es el síndrome de Rett? This will be valuable for your Spanish-speaking loved ones who want to better understand Rett syndrome. RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
Jan
25
Sat
Rett Syndrome Awareness Basketball Game: Quinnipiac vs Fairfield @ The People's United Center at Quinnipiac
Jan 25 @ 4:00 pm

Rett Syndrome Awareness Basketball Game: Quinnipiac vs Fairfield

Date: Saturday, January 25th, 2020 Time: 4:00pm The People's United Center at Quinnipiac, 305 Sherman Ave, Hamden, CT 06518 MAAC Tournament Kick Off, Rett Syndrome Awareness, Camper Reunion Day Information & Registration For Questions please contact Nicole McAmis at [email protected]
Feb
11
Tue
RettEd: Gene Therapy CRISPR/Cas9 Potential for Rett Syndrome
Feb 11 @ 1:00 pm
Dr. Kyle Fink and Dr. Dominique Pichard explore the use of CRISPR/Cas9 technologies for gene therapy in Rett syndrome research. This live webcast will be especially helpful to caregivers trying to understand the current state of this research and where we are headed. Questions and comments submitted in advance will be addressed, and there will be time for questions. Dr. Fink is a gene therapy neuro-scientist at UC Davis in San Diego. Dr. Pichard is Rettsyndrome.org's Chief Science Officer Visit our Education page for upcoming 2020 webcast topics, and to access recording links from past webcast and associated QA documents. Register Today
Mar
1
Sun
Napa Valley 1/2 & Full Marathon
Mar 1 @ 6:00 am

Join us for the Napa Valley Half & Full Marathon!

Ever wanted to run through wine country? Well here is your chance! Rettsyndrome.org has been granted ten charity bibs for the 2020 Napa Valley Half & Full Marathon! We are excited for this new partnership and can’t wait to grow our #RettRacer team! Help to end Rett syndrome while you run through wine country at this Boston qualifier race. Whether you plan to run or want to cheer on our team, please note all of the exciting information below! Date: Sunday, March 1st, 2020 Location: Napa, California Website (inclusive of hotel details, routes, etc): https://napavalleymarathon.org/ To participate as a Rett Racer in the Napa Valley Half or Full Marathon, please follow the steps below. *Note: there is a $2500 fundraising requirement for this event* Runners are responsible for all expenses incurred from race (registration, travel, etc).
  1. Register for the full or half marathon at https://napavalleymarathon.org/
  2. Half marathon Rett code (10% reg discount): RETTHALF2020
  3. Full marathon Rett code (10% reg discount): RETTFULL2020
  4. After registration, please visit Napa Valley team page to create your personal fundraising page.
  5. https://rettracer.everydayhero.com/us/napa-valley-2020-runners
  6. Note: You must login with an Everyday Hero account FIRST before you can join the ‘team’.
  7. Create & customize your fundraising page and share via social media and email with your contacts.
  8. Contact Jackie Ventura at [email protected] to order your Rett Racer t-shirt.
Rettsyndrome.org will have a tent at location TBD where runners can congregate post-race, Rett families can mingle and RSO will be passing out awareness information to spectators! Please follow this event to stay current on up to date information.
Mar
10
Tue
RettEd: Walking and Rett Syndrome feat. Dr. Meir Lotan
Mar 10 @ 1:00 pm
Dr. Meir Lotan is studying the effectiveness of home-based programs to enhance the functional abilities of girls with Rett syndrome. Dr. Lotan is an internationally renowned Rett syndrome physical therapist, author, and clinical researcher from the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel. We will discuss movement and orthopedic issues in Rett syndrome, how and when these typically occur, and what we can do about it. We will also discuss walking and ambulation across the lifespan, as well as effective strategies at home. Submit your questions or comments when you register. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
Apr
9
Thu
At-Home Moves and Stretches for Tweens & their Caregivers, feat. Meir Lotan @ Facebook Live
Apr 9 @ 11:00 am – 12:00 pm
Join us April 9 at 11 a.m. New York time (EDT) with Meir Lotan, PT, PhD, for another Facebook Live session with 4 U.S. families. Meir will work with their children who are between 8 and 13, with a range of abilities, using what they have on-hand to keep their child engaged and moving during this time. Dr. Lotan will conclude with a short presentation on hip subluxation and ways to do safe stretches at home. All live sessions will be posted on YouTube after the training.
Apr
16
Thu
At-Home Moves and Stretches for Adults & their Caregivers, feat. Meir Lotan @ Facebook Live
Apr 16 @ 11:00 am – 12:00 pm
Join us April 16 at 11 a.m. New York time (EDT) with Meir Lotan, PT, PhD, for another Facebook Live session with Rett families. Meir will work with their adult children who have a range of abilities. He will use what they have on-hand to keep their child engaged and moving during this time. Dr. Lotan will conclude with a short presentation on hip subluxation and ways to do safe stretches at home. All live sessions will be posted on YouTube after the training.
Apr
23
Thu
RettEd: What’s Going Right in Their Brain? Maximizing Neuroplasticity in Therapies
Apr 23 @ 1:00 pm
SPECIAL DAY: THURSDAY – The neuro-anatomy and circuitry assets of our children with Rett syndrome can change over time. Dr. Diener will explain how children can benefit from a well-developed, enriched therapy program. Dr. Diener will also share about her research project on understanding how Virtual Reality technology plays a productive role in OT and functional hand use. Presenter bio: Dr. Pam Diener is a highly respected neuroscientist and clinical researcher. Registration & Information
Apr
27
Mon
Communication Intervention, Part 1, feat. Gill Townend & Theresa Bartolotta  @ Facebook Live
Apr 27 @ 2:00 pm – 3:00 pm
Join us Monday, April 20 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they introduce Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the first of two sessions on Communication interventions. This will be a valuable training for parents and professionals who have limited experience working on or advancing communication in both children and adults with Rett syndrome. All live sessions will be posted on YouTube after the training.
Apr
30
Thu
Use Your Child’s Track System: Moves & Stretches, feat. Meir Lotan, PhD, PT @ Facebook Live
Apr 30 @ 11:00 am – 12:00 pm
Join us for our next live training session with Meir Lotan, PhD, PT, on Facebook. Dr. Lotan will be focusing on how to use your child or loved one’s home track system & ceiling lift for appropriate moves and stretches. Dr. Meir Lotan will also use this time to answer your questions. Take some time to watch the previous videos (found here) and submit your questions by Sunday, April 26 for Dr. Lotan through this survey: https://www.surveymonkey.com/r/9VDNM9W. Dr. Lotan will try to answer all your questions during our Facebook Live session. All live sessions will be posted on YouTube after the training.
May
2
Sat
4th Annual Iowa Virtual Strollathon
May 2 @ 9:00 am

4th Annual Iowa Strollathon

Saturday, May 2th, 2020 Time: 11:00am-2:00pm Location: Kinzler Construction Services, 700 SE Oralabor Rd, Ankeny IA 50021 Event Co-Chairs: Kelly Zwald, Megan Hill Mitchum, Libby Stromer ([email protected]) Website: www.iowa.strollathon.org FB event: https://www.facebook.com/events/944620542600601/
Postponed: 13th Annual St Louis Strollathon
May 2 @ 9:00 am

13th Annual St Louis Strollathon

Saturday, May 2th, 2020 Registration: 9:00am, Stroll: 10:00am Location: JCC, 2 Millstone Campus Dr., St. Louis, MO 63146 Event Chairs: Joyce Opinsky & Amy Kreher ([email protected]) Website: www.st-louis.strollathon.org FB event: https://www.facebook.com/events/481490805883829/
May
4
Mon
Communication Intervention, Part 2, feat. Gill Townend & Theresa Bartolotta  @ Facebook Live
May 4 @ 2:00 pm – 3:00 pm
Join us Monday, April 27 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they conclude Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the second of two sessions on Communication interventions. This will be a valuable training for parents and professionals who have limited experience working on or advancing communication in both children and adults with Rett syndrome. All live sessions will be posted on YouTube after the training.
May
11
Mon
Communication Intervention, Part 3, feat. Gill Townend & Theresa Bartolotta  @ Facebook Live
May 11 @ 2:00 pm – 3:00 pm
Join us Monday, May 11 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they conclude Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the third installment of sessions on communication intervention strategies for Rett syndrome. This will be a valuable training for parents and professionals who have limited experience working on or advancing communication in both children and adults with Rett syndrome. All live sessions will be posted on YouTube after the training.
May
15
Fri
RettEd: Mini Brains in Space – Pushing the Limits of Science
May 15 @ 1:00 pm
SPECIAL DAY: FRIDAY, MAY 15 Award-winning neuroscientist and Rett syndrome expert Dr. Alysson Muotri, Director of the Stem Cell Program at the University of California at San Diego, will share how he and his lab are pushing the limits of science in the name of your child with Rett syndrome. Dr. Mutori's lab uses animal models, neural stem cells, human and other primates’ pluripotent cells, and several tools to investigate brain development, evolution, and neural disorders, including Rett syndrome. Dr. Muotri has received recent headline attention for his experiment to study the impact of microgravity on human brain development, research which could improve disease modeling for neurodegenerative and developmental disorders as well as give clues into the future of humanity in space. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
May
17
Sun
12th Annual Michigan Strollathon
May 17 @ 9:00 am
12th Annual Michigan Strollathon Date: Sunday, May 17, 2020 Location: Drake Sport Park, 6801 Drake Rd, West Bloomfield Township, MI 48322 Registration: 10:00am, Stroll: 11:00am Event Chair: Lisa Fenberg ([email protected]) Website: www.michigan.strollathon.org FB event: https://www.facebook.com/events/233787530951786/
May
26
Tue
Ideas for modified aquatherapy at home, feat. Briana Czerwinski, PT @ Facebook Live
May 26 @ 2:00 pm – 3:00 pm
Join us Tuesday, May 26 at 2 p.m. New York time (EDT) with Briana Czerwinski, physical therapist, from the Rett Syndrome Clinic at Kennedy Krieger Institute. Briana will suggest ideas for modified aquatherapy that can be done by you, at home, in your swimming pool, hot jub, jacuzzi tub, bathtub or even a child-size blow-up pool to relax muscles, reduce anxiety, and guide safe movement and stretches for those with Rett syndrome. All live sessions will be posted on YouTube after the training.
Jun
6
Sat
Rett Racer Virtual Summer 5K
Jun 6 all-day
Rettsyndrome.org is excited to be hosting a virtual 5k on June 6th. Wherever you are lace up your shoes and hit your local neighborhood, trail (social distancing required) or treadmill and run (or walk!) to end Rett syndrome!
When: Saturday, June 6th, 2020
Where: Anywhere you are!
How: Register by creating an Everyday Hero page with us here.
·       No registration fee, however, fundraising is encouraged.
·       Once $100 has been raised, we will send you a Rett Racer t-shirt.
·       Share your photos on race day in our Facebook event on or on your Everyday Hero page. Use the hashtag #rettracers.
Any questions, please contact Jackie Ventura at [email protected] or 978-500-2495.
LEARN MORE
Jun
9
Tue
Facebook Live Chat: Current State of Rett Syndrome Research
Jun 9 @ 1:00 pm
Join us on Facebook Live to hear from our Chief Science Officer, Dr. Dominique Pichard. She will speak to the current state of Rett syndrome research, clinical trials, and how researchers are continuing their work during COVID-19 to help us create a world without Rett. Like us on Facebook and mark your calendars to tune in.
Jun
13
Sat
Cammy Can’s Cinderella Story – Virtual Edition
Jun 13 @ 9:30 pm – 11:00 pm
Cammy's Golden birthday Help us celebrate Cammy's 11th birthday by attending virtually and raising a ton of money to find a cure so she can drink with you in Sidebar on her 21st birthday! WHEN | June 13, 8:30-10:00 p.m.  WHERE | Facebook Live Event Information Make a Donation Follow CAMMY CAN on Facebook
Jun
18
Thu
RettGetAway – Postponed
Jun 18 @ 12:00 am – Jun 21 @ 12:00 am

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 MORE
Jul
15
Wed
RettEd: Longevity in Rett syndrome, Myths and Facts feat. Dr. Alan Percy and a panel of experts
Jul 15 @ 1:00 pm
Please join us WEDNESDAY, July 15, 2020 (note: this is not on our usual Tuesday) at 1:00 pm Eastern Time (New York) with Dr. Alan Percy from the University of Alabama at Birmingham and Primary Investigator for the Natural History Study, along with a panel of experts, as we discuss Myths and Facts around life expectancy in Rett syndrome. Rett syndrome is a complex disorder, and inaccurate or invalid facts cause more harm than good. So join this webinar to learn the facts. Hear from experts and parents. More than empowering, it can be life-saving for our children with Rett syndrome. Even though the topic is difficult to talk about, we know you think about it. Let's dispel the myths. We believe that transformative treatments will come from gene therapy, medications and neuro-habilitative therapies. Our research strategy targets every possible approach so that we continue to not just improve longevity, but to decrease syndrome impact. We remain committed to creating solutions for today, to improve lives today, while we work to create a world without Rett syndrome. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Jul
26
Sun
9th Annual Scramble for a Cure @ The Chief Golf Course
Jul 26 @ 8:30 am

9th Annual Scramble for a Cure

Date: Sat July 26th 2020 Cost: $300/Team Location: The Chief Golf Course, Bellaire MI Contact: Sue Knight (231) 495-9794 or [email protected] https://www.golfthechief.com/ Information & Registration
Jul
30
Thu
Casting 4 A Cure 2020 – Cancelled
Jul 30 @ 9:00 am

Casting 4 A Cure 2020 – Cancelled

July 30-Aug 03 Casting 4 A Cure is a loose band of compadres and compatriots who fly fish and fundraise to find a cure for Rett Syndrome. We have pulled together many of the fly fishing industry's leaders and they have taken on the cause like it is their own. Come join us at one of the events or become a sponsor and help the thousands of girls affected by this crippling neurological disorder. Information
Aug
11
Tue
RettEd: What Hurts? Understanding Pain and Rett Syndrome feat. Dr. Frank Symons
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