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
12
Fri
Categories: Ed Day Education Slider
Apr
13
Sat
All-You-Can-Eat Buffest & Open Bar and Silent Auction
Categories: Special Events - General
Apr
27
Sat
Hosted with Gillette Children’s Specialty Healthcare Rett Syndrome Services Clinic - St. Paul, MN (Regional Association Partner)
Categories: Ed Day Education Slider
May
11
Sat
Categories: Special Events - Meetings/Symposiums
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
May
18
Sat
Categories: Ed Day Education Slider
Enjoy an accessible family friendly park for 2 days with a private dinner on Saturday. Tickets are $50/person; this is at least a $70 savings! Plan your Accessible Seasame Place Day!
Dinner:
Date: Saturday, May 18 Time: 6:00 - 7:00 pm Where: Abby's Garden Grille After 5:30 pm parking is free Tickets must be pre-purchased by Wednesday, May 8th 2019 and are non-refundable. Tickets include: Private after-hours dinner with a Sesame character appearance, and 2-day park passes to be used on Saturday, May 18th and Sunday, May 19th. The park is less than a mile away from the Rett Ed Day at Sheraton Bucks County. Parking at Sesame Place is $27 or $23 based on the lot. The Sheraton offers free parking and free non-ADA shuttle. For more information contact Paige Nues [email protected] or with questions to Erin Cassano (local Rett parent) [email protected] Categories: Special Events - Non-Fundraising Events
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
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
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
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
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