Jul
10
Tue
Topic: Communication- Making it Count Speaker: Judy Lariviere, M.Ed.,OTR/L, UCSF Click to View Video (you will be prompted to submit a registration form to view the video) Audience questions are all addressed by our Speaker within the recording
Categories: Previous Webinars
Aug
7
Tue
Topic: U.S.-Russia Rett syndrome Cultural Exchange Speaker: Olga Timutsa, President, Rett Syndrome Association of Russia, Mother to Katerina Olga Timutsa will be visiting the U.S. as a guest of Rettsyndrome.org for a cultural exchange focused on diagnosis, care, and life for children and adults with Rett syndrome and their families. Hear Olga share about life in Russia with Rett syndrome and how our research and efforts have a global impact. Click Here to View Video
Categories: Previous Webinars
Aug
14
Tue
Topic: Understanding Autonomic Dysfunction in Rett Syndrome Speaker: Jeff Neul, MD, PhD, Vanderbilt University Click to View Video (you will be prompted to submit a registration form to view the video) Audience questions are all addressed by our Speaker within the recording
Categories: Previous Webinars
Sep
11
Tue
Topic: Epilepsy: Incidence, Treatments & Research Speaker: Eric Marsch, MD, PhD, CHOP Click to View Video Read the Q&A
Categories: Previous Webinars
Oct
9
Tue
Oct 9 @ 1:00 pm – 2:30 pm
Topic: Planning for a Protected Tomorrow with Special Update on ABLE Accounts Speaker: Mary Anne Ehlert, CFP, Protected Tomorrows, Inc Click to View Video Read the Q&A
Categories: Previous Webinars
Nov
13
Tue
Topic: Gross Motor Skills, benefits of Environmental Enrichment Speaker: Jenny Downs, PhD Telethon Kids Institute, AU Click to View video
Categories: Previous Webinars
Dec
11
Tue
Topic: Siblings Unique Concerns, Unique Opportunities Speaker: Emily Holl, Director, Sibling Support Project Click to View Video
Categories: Previous Webinars
Jan
8
Tue
Jan 8 @ 1:00 pm – 2:30 pm
Topic: Newer Parents: Recommendations for a Healthier Start to Your Unexpected Journey Speaker: Tristen Dinkel, RN, DCH, Paige Nues, Sam Brant Click to View Recording
Categories: Education Slider Webinar
Feb
12
Tue
Topic: Rett Syndrome Research Outlook: 2019 & Beyond Speaker: Steve Kaminsky, PhD Click to View Recording
Categories: Education Slider Webinar
Mar
12
Tue
Topic: A Good Night’s Sleep To All Speaker: Dr. Daniel Glaze, TCH, BCM Click to View Recording
Categories: Education Slider Webinar
Apr
6
Sat
Categories: Special Events - General
Apr
8
Mon
Topic: IEP Strategies for Successful Inclusion Speaker: Mickie McCool and Katie Busch Click to View Recording
Categories: Education Slider Webinar
Apr
13
Sat
Categories: Special Events - Run/Walk
All-You-Can-Eat Buffest & Open Bar and Silent Auction
Categories: Special Events - General
Apr
27
Sat
Apr 27 @ 8:00 am – 11:00 am
Categories: Special Events - Run/Walk
May
5
Sun
5K Run, 1 Mile Fun Run & 1 Mile Walk or Stroll
To Benefit Rettsyndrome.org
For more information, please email Live Rett Free. You may also call Amanda at (419) 306-4234 or Karen at (419) 957-3875. Download the Offline Registration Form to register, sponsor or make a donation by check. Categories: Special Events - Run/Walk
May
11
Sat
Speakers: Jenny Downs, PhD, Michelle Stahlhut, PT, PhD, Theresa Bartolotta, PhD, Donna Witzleben Special Day/Time : Saturday, 11:00 AM EST Register
Categories: Education Slider Webinar
May
17
Fri
Categories: Special Events - General
Jun
11
Tue
Topic: Nutrition Strategies for Rett Syndrome Speaker: Suzanne Geerts, MS, RD, LD UAB Register
Categories: Previous Webinars Webinar
Jun
15
Sat
Categories: Special Events - General
Categories: Special Events - General
Jul
9
Tue
Topic: Genetics of Rett Syndrome and the MECP2 Gene Speakers: Steve Skinner, MD and Hannah Warren, LMSW Register
Categories: Education Slider Webinar
Jul
28
Sun
Categories: Special Events - General
Aug
8
Thu
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. 3 day single entry - $2,500.00 3 day team entry - $5,000.00 Location: 10 Warm Creek Ln. Victor, ID 8345 | |
Categories: Special Events - General
Aug
17
Sat
RUNNING FOR RETT SYNDROME 5K
Saturday, August 17, 2019 Registration – 8:30am Run Starts – 9:00am Entry Fee – $20.00 Inquiries – Leah(507)251-4815 Registration & Information Categories: Special Events - Run/Walk
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
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
Gulf Coast Endurance Ride
Saturday, October 5th from Biloxi MS to Pensacola FL. If you’re up for a challenging ride, consider joining KC Byers and friends for a century ride. KC is the creator of the Rett Ride Across America and step-dad to Katelyn with Rett. Last year he completed his second 2,600 mile ride across the country. Here are the details for this year’s Endurance Ride: Start: Mary Mahoneys, 110 Rue Magnolia, Biloxi, MS 39530 Finish: WEAR TV, 4990 Mobile Highway, Pensacola FL 32506 114 mile with volunteer sag support & police escorts Join for any length of the ride. Here are the multiple lag points where you can join. Lag Point #1 (120 Miles): Meet at Mary Mahoneys, 110 Rue Magnolia, Biloxi, MS 39530 Lag Point #2 (90 miles): Meet at US Hwy 90 at the Missippi/Alabama line Lag Point #3 (70 miles): Meet at Raceway 6709, 5455 Government Bvld, Mobile AL 36619 (Theodore exit junction I-10 and US 90) Lag Point #4 (45 miles): Meet at Eastern Shore Bike Shop, 845 US-90 Ste 102, Daphne, AL 36526 Lag Point #5 (20 miles): Maw Maw’s Country Market, 26010 US Hwy 90, Robertsdale, AL Junction 90 & 87 END at: WEAR Channel 3, 4990 Mobile Hwy, Pensacola Fl Ride in style with your RRAA gear- select a jersey, cycle shorts or both. Shop here. Register TODAY! Categories: Special Events - Run/Walk
OKC River Run
The goal of the OKC River Run is to raise support and awareness for Rett Syndrome, which is a genetic disorder that affects mainly girls and severely impairs "nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily." The need for research is critical. The OKC River Run is a USATF sanctioned and certified course along the picturesque Oklahoma River that provides a smooth, level, paved trail through downtown Oklahoma City free of vehicle traffic.- 6:30 a.m. to 8:30 a.m. - Packet Pick Up and onsite Registration.
- 8:00 am. - Half Marathon* Start
- 8:50 a.m. - 5K Start
- 9:00 a.m. - 10K Start
- 9:00 -11:00 a.m. - Awards Ceremony *See Details
All races will use chip timing for official race results.
All courses are USATF certified.
Registration & Information Categories: Special Events - Run/Walk
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