Events

Dec
7
Sat
Hannah’s Art Show
Dec 7 @ 2:00 pm

Hannah’s Art Show

Save the Date for Hannah’s Art Show. There will be note cards, prints, and original paintings for sale to benefit Rettsyndrome.org.

Date: December 7, 2019
Time: 2-4pm
Location: Four Corners Framing Gallery

Contact Information: Trisha Carpenter
Email: tpcarpenter503@yahoo.com

Jan
7
Tue
RettEd in Spanish: ¿Qué es el síndrome de Rett?
Jan 7 @ 1:00 pm

Please join us Tuesday, January 7, 2020 at 1:00 pm eastern for a presentation in Spanish from our bilingual Rett syndrome expert neurologist Dr. Mario Petersen, Section Chief, Neurodevelopmental Pediatrics and Endowed Chair, The Gerber Center for Infant Development and Nutrition, at Helen DeVos Children’s Hospital in Grand Rapids, MI, and recent past Medical Director of the Rett Syndrome clinic at Oregon Health Sciences University.

We will discuss ¿Qué es el síndrome de Rett?

This will be valuable for your Spanish-speaking loved ones who want to better understand Rett syndrome.

RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams.

Register Today

Jan
25
Sat
Rett Syndrome Awareness Basketball Game: Quinnipiac vs Fairfield
Jan 25 @ 4:00 pm

Rett Syndrome Awareness Basketball Game: Quinnipiac vs Fairfield

Date: Saturday, January 25th, 2020
Time: 4:00pm

The People’s United Center at Quinnipiac, 305 Sherman Ave, Hamden, CT 06518
MAAC Tournament Kick Off, Rett Syndrome Awareness, Camper Reunion Day

Information & Registration

For Questions please contact Nicole McAmis at nicole.mcamis@quinnipiac.edu

Feb
11
Tue
RettEd: Gene Therapy CRISPR/Cas9 Potential for Rett Syndrome
Feb 11 @ 1:00 pm

Dr. Kyle Fink and Dr. Dominique Pichard explore the use of CRISPR/Cas9 technologies for gene therapy in Rett syndrome research. This live webcast will be especially helpful to caregivers trying to understand the current state of this research and where we are headed. Questions and comments submitted in advance will be addressed, and there will be time for questions.

Dr. Fink is a gene therapy neuro-scientist at UC Davis in San Diego.
Dr. Pichard is Rettsyndrome.org’s Chief Science Officer

Visit our Education page for upcoming 2020 webcast topics, and to access recording links from past webcast and associated QA documents.

Register Today

Mar
10
Tue
RettEd: Walking and Rett Syndrome feat. Dr. Meir Lotan
Mar 10 @ 1:00 pm

Dr. Meir Lotan is studying the effectiveness of home-based programs to enhance the functional abilities of girls with Rett syndrome. Dr. Lotan is an internationally renowned Rett syndrome physical therapist, author, and clinical researcher from the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel.

We will discuss movement and orthopedic issues in Rett syndrome, how and when these typically occur, and what we can do about it. We will also discuss walking and ambulation across the lifespan, as well as effective strategies at home. Submit your questions or comments when you register.

Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams.

Register Today

Apr
23
Thu
RettEd: What’s Going Right in Their Brain? Maximizing Neuroplasticity in Therapies
Apr 23 @ 1:00 pm

SPECIAL DAY: THURSDAY – The neuro-anatomy and circuitry assets of our children with Rett syndrome can change over time. Dr. Diener will explain how children can benefit from a well-developed, enriched therapy program. Dr. Diener will also share about her research project on understanding how Virtual Reality technology plays a productive role in OT and functional hand use.

Presenter bio: Dr. Pam Diener is a highly respected neuroscientist and clinical researcher.

Registration & Information

Jun
6
Sat
East Coast Rettsyndrome.org Ed Day – POSTPONED
Jun 6 @ 9:00 am

Postponed-East Coast Rettsyndrome.org Ed Day

Due to COVID-19, this event has been postpone.

Baltimore, MD (in partnership with Kennedy Krieger Institute )

Our Ed Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more.

REGISTRATION & INFORMATION

Jun
13
Sat
Cammy Can’s Cinderella Story – Virtual Edition
Jun 13 @ 8:30 pm – 10:00 pm

Cammy's Golden birthday

Help us celebrate Cammy’s 11th birthday by attending virtually and raising a ton of money to find a cure so she can drink with you in Sidebar on her 21st birthday!

WHEN | June 13, 8:30-10:00 p.m. 
WHERE | Facebook Live Event

Information

Make a Donation

Follow CAMMY CAN on Facebook

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

LEARN MORE

Jul
30
Thu
Casting 4 A Cure 2020 – Cancelled
Jul 30 @ 9:00 am

Casting 4 A Cure 2020 – Cancelled

July 30-Aug 03

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.

Information