Events

Jul
10
Tue
Communication- Making it Count
Jul 10 @ 1:00 pm – 2:30 pm

Topic: Communication- Making it Count
Speaker: Judy Lariviere, M.Ed.,OTR/L, UCSF

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(you will be prompted to submit a registration form to view the video)
Audience questions are all addressed by our Speaker within the recording

Aug
7
Tue
U.S.-Russia Rett syndrome Cultural Exchange
Aug 7 @ 1:00 pm – 2:30 pm

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

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

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(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

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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

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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

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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

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May
18
Sat
Sesame Place Dinner & Park
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 pnues@rettsyndrome.org or with questions to Erin Cassano (local Rett parent) erin.cassano@gmail.com

 

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
18
Thu
RettGetAway – Postponed
Jun 18 @ 12:00 am – Jun 21 @ 12:00 am

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 pnues@rettsyndrome.org or Jennifer Mosca at info@thekaylamoscafoundation.org

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