Events

Aug
14
Tue
Understanding Autonomic Dysfunction in Rett Syndrome
Aug 14 @ 1:00 pm – 2:30 pm
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
Sep
11
Tue
Epilepsy: Incidence, Treatments & Research
Sep 11 @ 1:00 pm – 2:30 pm
Topic: Epilepsy: Incidence, Treatments & Research Speaker: Eric Marsch, MD, PhD, CHOP Click to View Video Read the Q&A
Oct
9
Tue
Planning for a Protected Tomorrow with Special Update on ABLE Accounts
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
Nov
13
Tue
Gross Motor Skills, benefits of Environmental Enrichment
Nov 13 @ 1:00 pm – 2:30 pm
Topic: Gross Motor Skills, benefits of Environmental Enrichment Speaker: Jenny Downs, PhD Telethon Kids Institute, AU Click to View video
Dec
11
Tue
Siblings Unique Concerns, Unique Opportunities
Dec 11 @ 1:00 pm – 2:30 pm
Topic: Siblings Unique Concerns, Unique Opportunities Speaker: Emily Holl, Director, Sibling Support Project Click to View Video
Jan
8
Tue
Newer Parents: Recommendations for a Healthier Start to Your Unexpected Journey
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
Feb
12
Tue
Rett Syndrome Research Outlook: 2019 & Beyond
Feb 12 @ 1:00 pm – 2:30 pm
Topic: Rett Syndrome Research Outlook: 2019 & Beyond Speaker: Steve Kaminsky, PhD Click to View Recording
Mar
12
Tue
A Good Night’s Sleep To All
Mar 12 @ 1:00 pm – 2:30 pm
Topic: A Good Night’s Sleep To All Speaker: Dr. Daniel Glaze, TCH, BCM Click to View Recording
Apr
6
Sat
Paint for a Cure @ De'borah's Jazz Cafe
Apr 6 @ 5:00 pm – 9:00 pm
Apr
8
Mon
IEP Strategies for Successful Inclusion
Apr 8 @ 1:00 pm – 2:30 pm
Topic: IEP Strategies for Successful Inclusion Speaker: Mickie McCool and Katie Busch Click to View Recording
Apr
13
Sat
Fighting for Finley
Apr 13 @ 5:00 pm – 9:00 pm
All-You-Can-Eat Buffest & Open Bar and Silent Auction
May
4
Sat
St. Louis Strollathon @ JCC,2
May 4 @ 9:00 am – 10:00 am
Registration: 9:00am, Stroll: 10:00am Event Chairs: Joyce Opinsky & Amy Kreher
3rd Annual Iowa Strollathon @ Kinzler Construction
May 4 @ 11:00 am – 2:00 pm
Co-Chairs: Kelly Zwald, Megan Hill Mitchum, Libby Stromer
May
5
Sun
Michigan Strollathon @ Drake Sport Park
May 5 @ 10:00 am – 11:00 am
Registration: 10:00am, Stroll: 11:00am
May
11
Sat
Adulthood: Living and Lifestyle Options
May 11 @ 1:00 pm – 2:30 pm
Speakers: Jenny Downs, PhD, Michelle Stahlhut, PT, PhD, Theresa Bartolotta, PhD, Donna Witzleben Special Day/Time : Saturday, 11:00 AM EST Register
May
17
Fri
The Great Rett Shootout @ Blackwood Gun Club
May 17 all-day
May
18
Sat
Sesame Place Dinner & Park @ Sesame Place
May 18 – May 19 all-day
Sesame Place Dinner & Park @ Sesame Place

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]  
Jun
1
Sat
Maryland Strollathon @ Cecil Park Community Center
Jun 1 @ 11:00 am – 12:00 pm
Jun
11
Tue
Nutrition Strategies for Rett Syndrome
Jun 11 @ 1:00 pm – 2:30 pm
Topic: Nutrition Strategies for Rett Syndrome Speaker: Suzanne Geerts, MS, RD, LD UAB Register
Jun
15
Sat
Siera’s Scramble @ Maple Creek Golf Club
Jun 15 all-day
Charmed by Charity
Jun 15 @ 1:37 am – 2:37 am
Jul
9
Tue
Genetics of Rett Syndrome and MECP2
Jul 9 @ 1:00 pm – 2:30 pm
Topic: Genetics of Rett Syndrome and the MECP2 Gene Speakers: Steve Skinner, MD and Hannah Warren, LMSW Register
Jul
28
Sun
Scramble for a Cure @ Hawk’s Eye Golf Course
Jul 28 all-day
Aug
8
Thu
Casting 4 A Cure
Aug 8 @ 9:00 am
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
Registration & Information
Aug
31
Sat
Pennsylvania Strollathon @ Millvale Riverfront Park
Aug 31 @ 9:00 am

6th Annual Pennsylvania Strollathon

Join us for the 6th Annual Pennsylvania Strollathon Saturday August 31st, 2019 Registration: 9:00am, Stroll: 10:15am Location: Millvale Riverfront Park, Millvale PA? Directions :: Website  Event Chair: Christina Dean ([email protected]) & Jennifer Langzettel ([email protected]) Registration & Information
Sep
7
Sat
Chicago Strollathon & Picnic @ Kankanee State Park
Sep 7 @ 12:00 pm

13th Annual Chicago Strollathon

Join us for the 13th Annual Chicago Strollathon! Saturday September 7th, 2019 When: 11:00am Location: Kankanee State Park Map ll Directions Event Chair: Misty Gruenes ([email protected]) Visit the Event page
Nebraska Strollathon @ Yanney Park
Sep 7 @ 1:00 pm

8th Annual Nebraska Strollathon

Join us for the 8th Annual Nebraska Strollathon Saturday, September 7th 2019 Registration: 1:00pm, Stroll: 2:00pm Location: Yanney Park, 2020 W 11th St, Kearney, NE 68845 Rotary Shelter by the Splash pad Event Chairs: Jacy Horst & Megan Ladenburger & Elly Gullion Registration & Information
Sep
10
Tue
RettEd: 2019 Research Update 20 Years Since the MECP2 Gene Discovery feat. Huda Y. Zoghbi, M.D.
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
Sep
14
Sat
Raise a Glass @ Austins Bar & Grill
Sep 14 @ 4:00 pm
Raise a Glass logo banner WHEN | Saturday, September 14th, 2019 TIME | 3:00pm-7:00pm WHERE | Austins Bar & Grill: Directions | Website Registration & Information
Sep
22
Sun
Portland Strollathon @ Rose Quarter
Sep 22 @ 1:00 pm

14th Annual Portland Strollathon

Join us for the 14th Annual Portland Strollathon Sunday, September 22nd Registration: 1:00pm, Stroll: 2:30pm Location: Rose Quarter, Portland OR Directions :: Website Event Chair: Lacey & Leigh Calvert  Registration & Information