Events

Nov
1
Fri
Raising A Hand
Nov 1 @ 6:00 pm

YOU CAN MAKE A DIFFERENCE

When: Friday, November 1, 2019

Where: Mercedes-Benz of The Woodlands
16917 Interstate 45 South
The Woodlands, TX 77385

Time: “Come and Go” from 6:00 p.m. to 9:00 p.m.

Parking: Valet Parking Available

Fare: Dosey Doe is providing wine and BBQ sliders at no cost

Entertainment: Acoustic show by Kevin and his son Coleton

Featured Art: 30 – 40 of Dave Clements’ and Kevin Black’s best music black and white photographs taken over the last decade will be available for purchase (tax-deductible donation to Rett Syndrome)

• Meet photographers Dave Clements & Kevin Black.
• View their photography that will be displayed in the show room.
• Enjoy some music memorabilia.
• Listen to a live music performance by Kevin Black and his son Coleton.
• Purchase a copy of their coffee table book Raising A Hand – Volume One. Pre-order order forms for Volume Two will be available.
• Learn about Rett syndrome and what the two photographers are doing to raise awareness for this rare disorder.
• Enjoy a Dosey Doe brisket slider and a glass of wine.
• Enjoy the collection of some of the finest automobiles in the world!

Finally if you can’t make it and still have not pre-ordered your copy of Raising A Hand – Volume Two, you can go to www.RaisingAHand.com and do so for $42.95 ($35 plus $7.95 shipping). Plus for an additional $25 donation you can get a signed copy of Volume One shipped to your home almost immediately.

Information Registration

Nov
2
Sat
URMC Rett Syndrome Family Education Day
Nov 2 @ 8:00 am

$10 registration fee per family including conference, breakfast and lunch.

Families and caregivers: don’t miss the opportunity to hear from leading doctors, researchers and service professionals in the Rett Syndrome field.

Information & Registration

For more information, email: delmonte.urmc.edu or RettSyndromeFamilyEducation@urmc.rochester.edu

Nov
9
Sat
Reach for a Cure: Houston
Nov 9 @ 6:00 pm

Be a part of our Inaugural Boots & Bling Rett Gala!

Saturday, November 9th, 2019

Firehouse Saloon
5930 Southwest Freeway, Houston, TX 77057

6:00 p.m. VIP reception for Rett Families & Sponsors
6:30 p.m. Doors open to public

We’re excited to invite you to Houston’s very first Reach for a Cure – Boots & Bling Rett Gala 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.

Get dolled up, but don’t forget your boots! This honky-tonk is going to rattle with special musical guests Coleton Black,  Chubby Knuckle Choir and Pauline Reese. We’ll also have a live and silent auction full of great items – perfect time to get holiday gifts, or something for yourself!

Registration & Sponsorship

View Sponsorship Opportunities

All proceeds from sponsorships, donations, and tickets goes to Rettsyndrome.org, the longest-standing Rett syndrome research and family empowerment organization.

Nov
12
Tue
RettEd: Orthopedics: A Focus on Scoliosis and Hips
Nov 12 @ 1:00 pm

Please join us as we speak to an orthopedic expert in neuromuscular scoliosis and developmental hip dysplasia. We will discuss how and when these typically occur in Rett syndrome, and what we can do about it.

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

Nov
15
Fri
Find a Cure: Pop-up Event
Nov 15 @ 6:00 pm

Find a Cure

a one night pop-up event with art by Cecily Miniaci

Date: November 15, 2019
Time: 6-9PM
Location: 701 Broadway Blvd, Kansas City, MO

Local Kansas City artist, Cecily Miniaci, will be doing a pop up art event downtown at Roasters Block on November 15th from 6-9pm with a portion of the proceeds benefiting rettsyndrome.org.

Information & Registration

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

Dec
10
Tue
RettEd: Clinical Trial Enrollment Opportunities and Status Update
Dec 10 @ 1:00 pm

Please join us as Tim Benke, MD PhD, Director, Rett syndrome Clinic, Children’s Hospital Colorado, and Rettsyndrome.org Medical Advisor and Paige Nues, Director of Family Empowerment at Rettsyndrome.org to explore the clinical trials landscape outlook for 2020.

This live webcast will be especially helpful to caregivers who are wondering if participating in a clinical trial could be an option for their family and how to become research-ready. We will discuss what clinical trials are enrolling, about to enroll, or have closed enrollment. We will also discuss enrollment criteria, what it means to participate in a trial, and hear from a panelist of parent trailblazers whose children have participated in a Rett syndrome clinical trial to hear how they did it.

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

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

Register Today

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