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
10
Tue
Sep 10 @ 1:00 pm
Please join us Tuesday, September 10th at 1:00 pm eastern with Huda Y. Zoghbi, M.D., Director, Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital; Baylor College of Medicine as we journey from discovery of the Rett syndrome disease-causing MECP2 gene to where that discovery and subsequent learnings have taken us to today. This live webinar is intended to provide hope and inspiration to caregivers and families. Our goal is to help you frame our collective Hope for better treatments and ultimately a cure for Rett syndrome while empowering you with strategies in the here and now. 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 webinar topics, and to access recording links from past webinars 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 Webinar
Sep
14
Sat
WHEN | Saturday, September 14th, 2019 TIME | 3:00pm-7:00pm WHERE | Austins Bar & Grill: Directions | Website Registration & Information
Categories: Special Events - General
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
Sep
29
Sun
Join us for an afternoon of Football & Fun!
Sunday, September 29, 2019 Loading Dock 2400 Kettner Blvd, #110 San Diego, CA 92101 4:00 p.m. to 9 p.m. We're excited to invite you to San Diego's very first Reach for a Cure – Football & Fun 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. Enjoy Sunday football, beer and a chance to connect with others who share a passion to create a world without Rett. We'll have a silent auction full of great items – perfect time to get holiday gifts, or something for yourself! Registration & Sponsorship View sponsorship document opportunities All proceeds from sponsorships, donations, and tickets goes to Rettsyndrome.org, the longest-standing Rett syndrome research and family empowerment organization.
Categories: Special Events - General
Oct
5
Sat
Oct 5 @ 5:00 pm
Join us for the 3rd Annual Purple Pumpkin Party! The Purple Pumpkin Party to benefit the Scarlett Parks Foundation. This signifies that, in honor of their granddaughter Scarlett Parks, Don and Jodi Searcy will be conducting a fundraising event, the “Purple Pumpkin Party”. The event will take place October 5th, 2019 at the International Agri-Center in Tulare CA. The Purple Pumpkin Party will be a celebration of a community coming together to help raise awareness and money to find a cure for Rett syndrome, consisting of dinner, entertainment, an auction, silent auction and many other fun items to bid on to help raise money needed to help find a cure. Registration & Event Details
Categories: Special Events - General
Oct
15
Tue
Newly Published Communication Guidelines for Rett
Tuesday, October 15, 2019 1:00pm Webinar Please join us as Gill Townend, CertMRCSLT, M.Phil., B.Med.Sci.(Speech), Researcher and Augmentative & Alternative Communication Expert, Rett Expertise Centre Netherlands and Theresa Bartolotta, Ph.D., CCC-SLP, Professor, Department of Speech-Language Pathology, School of Education, Monmouth University, Monmouth University Graduate Center who will be introducing the development, final statement and recommendations of the largest body of evidence-based Communication guidelines to be published for Rett syndrome, work that was funded by Rettsyndrome.org and accomplished by a global team of experts. Our presenters will also be sharing the accessible, user-friendly handbook version of the guidelines with recommendations of how to embed these at home, in the classroom, and in day programs. Our goal is to help empower you with strategies in the here and now while we accelerate work towards 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. Registration & Information Categories: Education Slider Webinar
Oct
19
Sat
WHEN | Saturday, October 19, 2019
12:00 PM – 4:00 PM
WHERE | Whittier High School 12417 East Philadelphia St Whittier, CA 90601 Directions
Visit the Event Page Event Flyer Categories: Special Events - General
A Night at the Races to Benefit Rett Syndrome
Chinese Auction Door Prizes $10 Horses $10 Entry Fee Tickets available at the door Doors open at 6pm Races start at 9pm Categories: Special Events - General
Oct
24
Thu
Oct 24 @ 9:00 am
WHEN | Thursday, October 24th, 2019 TIME | 9:00am WHERE | Monmouth University: Directions | Website Registration Information
Oct
26
Sat
Date: Saturday, October 26, 2019 Time: 6:00PM-10:00PM Location: Tre Posti, 641 Main Street, St. Helena, CA 94574 Registration & Information
Categories: Special Events - General
Nov
1
Fri
Zumbathon Charity Event for Rett Syndrome
In Honor for Allison
Date: Friday, November 1st Time: 5:00-7:30pm Join us for an evening of instructed Zumba while raising money for Rettsyndrome.org. Admission is $10. Contact Information: Claudia Juarez 817-233-2189 Categories: Special Events - General
YOU CAN MAKE A DIFFERENCE
When: Friday, November 1, 2019 Where: Mercedes-Benz of The Woodlands 16917 Interstate 45 South The Woodlands, TX 77385 Time: "Come and Go" from 6:00 p.m. to 9:00 p.m. Parking: Valet Parking Available Fare: Dosey Doe is providing wine and BBQ sliders at no cost Entertainment: Acoustic show by Kevin and his son Coleton Featured Art: 30 - 40 of Dave Clements' and Kevin Black's best music black and white photographs taken over the last decade will be available for purchase (tax-deductible donation to Rett Syndrome) • Meet photographers Dave Clements & Kevin Black. • View their photography that will be displayed in the show room. • Enjoy some music memorabilia. • Listen to a live music performance by Kevin Black and his son Coleton. • Purchase a copy of their coffee table book Raising A Hand - Volume One. Pre-order order forms for Volume Two will be available. • Learn about Rett syndrome and what the two photographers are doing to raise awareness for this rare disorder. • Enjoy a Dosey Doe brisket slider and a glass of wine. • Enjoy the collection of some of the finest automobiles in the world! Finally if you can't make it and still have not pre-ordered your copy of Raising A Hand - Volume Two, you can go to www.RaisingAHand.com and do so for $42.95 ($35 plus $7.95 shipping). Plus for an additional $25 donation you can get a signed copy of Volume One shipped to your home almost immediately. Information Registration Categories: Special Events - General
Nov
2
Sat
Nov 2 @ 8:00 am
$10 registration fee per family including conference, breakfast and lunch. Families and caregivers: don't miss the opportunity to hear from leading doctors, researchers and service professionals in the Rett Syndrome field. Information & Registration For more information, email: delmonte.urmc.edu or [email protected]
Categories: Ed Day Education Slider
Nov
9
Sat
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.
Categories: Special Events - General
Nov
12
Tue
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
Categories: Education Slider Webinar
Nov
15
Fri
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 Categories: Special Events - General
Dec
7
Sat
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] Categories: Special Events - General
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
Jan
7
Tue
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
Categories: Ed Day Education Slider
Jan
25
Sat
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] Categories: Special Events - General
Feb
11
Tue
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
Categories: Ed Day Education Slider
Mar
10
Tue
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
Categories: Ed Day Education Slider
Apr
23
Thu
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
Categories: Ed Day Education Slider
May
15
Fri
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
Categories: Education Slider Webinar
Jun
9
Tue
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.
Categories: Education Slider Webinar
Jun
13
Sat
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
Categories: Special Events - General
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 MOREJul
15
Wed
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
Categories: Education Slider Webinar
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