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.
Be a part of our Inaugural Boots & Bling Rett Gala!
5930 Southwest Freeway, Houston, TX 77057
Find a Cure
a one night pop-up event with art by Cecily Miniaci
Date: November 15, 2019
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.
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
Location: Four Corners Framing Gallery
Contact Information: Trisha Carpenter
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.
Rett Syndrome Awareness Basketball Game: Quinnipiac vs Fairfield
Date: Saturday, January 25th, 2020
The People’s United Center at Quinnipiac, 305 Sherman Ave, Hamden, CT 06518
MAAC Tournament Kick Off, Rett Syndrome Awareness, Camper Reunion Day
For Questions please contact Nicole McAmis at firstname.lastname@example.org
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 email@example.com or Jennifer Mosca at firstname.lastname@example.org
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.
Please join us Tuesday, August 11, 2020 at 1:00 pm Eastern Time (New York) with Dr. Frank Symons, Associate Dean for Research and Policy, Department of Psychology, and the Center for Neurobehavioral Development at the University of Minnesota as we discuss issues of pain in Rett syndrome.
Rett syndrome is a complex disorder, and sharing of accurate information is more than empowering, it can be life-saving for our children with Rett syndrome. So join this webinar to learn the facts. Even though the topic is difficult to talk about, we know you think about it. In terms of pain, Dr. Symons’ areas of specific research include (a) the reliable and valid assessment of pain in children and adults with significant communicative and motor impairments; (b) the relation between behavioral and biological variables as markers for altered pain; (c) modifying/adapting sensory testing; and (d) the relation between pain and problem behavior, specifically self-injury.
With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.