Jan
30
Tue
Jan 30 @ 1:00 pm – 2:30 pm
Topic: "What is Rett Syndrome?"... the Diagnosis, the Symptoms, the Natural History, and Best Care Interventions Today Speaker: Alan Percy, MD, UAB Click to View Video Read the Q&A
Categories: Previous Webinars
Feb
13
Tue
Feb 13 @ 1:00 pm – 2:30 pm
Topic: Respiratory Issues in Rett Syndrome, esp during cold and flu season Speaker: Marianna Sockrider, MD, DrPH, AE-C, TCH Click to View Video Read the Q&A
Categories: Previous Webinars
Mar
13
Tue
Topic: Puberty and Adulthood: Information for moms, dads, everyone! Speaker: Jane Lane, RN, UAB Click to View Video Audience questions are all addressed by our Speaker within the recording
Categories: Previous Webinars
Apr
10
Tue
Apr 10 @ 1:00 pm – 2:30 pm
Topic: Common GI Issues in Rett syndrome, How to Intervene and Clinical Research Outlook Speaker: Dr. K Motil, BCM, Texas Children's Hospital Click to View Video Audience questions are all addressed by our Speaker within the recording
Categories: Previous Webinars
May
8
Tue
Topic: IEP: Strategies for Rett Success Speaker: Valerie Owen, PhD 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
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
Apr
6
Sat
Categories: Special Events - General
Apr
13
Sat
All-You-Can-Eat Buffest & Open Bar and Silent Auction
Categories: Special Events - General
May
11
Sat
Categories: Special Events - Meetings/Symposiums
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
Jun
22
Sat
Rettsyndrome.org Ed Day hosted by TBD – Boston, MA
Jul
20
Sat
Hosted by UCSF Benioff Children’s Hospitals Katie’s Clinic for Rett and Related Disorders, a Rettsyndrome.org Clinical Research Center of Excellence
Intended for anyone wanting to connect on issues important to Rett syndrome families, especially clinical trial information and emphasis on the enriched environment. Attendees will enjoy a fun camp-style day of discussion and “living education” activities that will cover: research updates, medical and therapeutic interventions, and communication strategies.WHEN | Saturday, July 20, 2019
WHERE | Camp Arroyo, 5555 Arroyo Road, Livermore, CA 94550
TIME | 9:00a.m. - 4:00p.m. (please arrive at 8:30a.m.)
Fee: $10/per person. Diagnosed children are FREE.
Includes: Presentations, hands-on activities and demonstrations, interactive panel discussion, continental breakfast and lunch. We will have an onsite photographer for family portraits for RSO awareness and education materials. If you choose to participate, photos will be shared with you at no charge. REGISTER NOW!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
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
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
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