Sep
27
Fri
The program will have lectures from international experts. Subjects include epilepsy, learning and communication, physiotherapy and other rehabilitation, nutrition, sleep and neurological problems. The purpose of Rett Finland is to support families with Rett's syndrome diagnosed child. The Association has about 100 members. For more information on the association's activities, visit the association's website at www.rettfinland.fi and on Facebook www.facebook.com/Rett-Finland Registration & Information
Categories: Special Events - Meetings/Symposiums
Sep
28
Sat
The program will have lectures from international experts. Subjects include epilepsy, learning and communication, physiotherapy and other rehabilitation, nutrition, sleep and neurological problems. The purpose of Rett Finland is to support families with Rett's syndrome diagnosed child. The Association has about 100 members. For more information on the association's activities, visit the association's website at www.rettfinland.fi and on Facebook www.facebook.com/Rett-Finland Registration & Information
Categories: Special Events - Meetings/Symposiums
Sep
29
Sun
Join us for an afternoon of Football & Fun!
Sunday, September 29, 2019 Loading Dock 2400 Kettner Blvd, #110 San Diego, CA 92101 4:00 p.m. to 9 p.m. We're excited to invite you to San Diego's very first Reach for a Cure – Football & Fun 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. Enjoy Sunday football, beer and a chance to connect with others who share a passion to create a world without Rett. We'll have a silent auction full of great items – perfect time to get holiday gifts, or something for yourself! Registration & Sponsorship View sponsorship document opportunities All proceeds from sponsorships, donations, and tickets goes to Rettsyndrome.org, the longest-standing Rett syndrome research and family empowerment organization.
Categories: Special Events - General
Oct
5
Sat
Oct 5 @ 5:00 pm
Join us for the 3rd Annual Purple Pumpkin Party! The Purple Pumpkin Party to benefit the Scarlett Parks Foundation. This signifies that, in honor of their granddaughter Scarlett Parks, Don and Jodi Searcy will be conducting a fundraising event, the “Purple Pumpkin Party”. The event will take place October 5th, 2019 at the International Agri-Center in Tulare CA. The Purple Pumpkin Party will be a celebration of a community coming together to help raise awareness and money to find a cure for Rett syndrome, consisting of dinner, entertainment, an auction, silent auction and many other fun items to bid on to help raise money needed to help find a cure. Registration & Event Details
Categories: Special Events - General
Oct
19
Sat
WHEN | Saturday, October 19, 2019
12:00 PM – 4:00 PM
WHERE | Whittier High School 12417 East Philadelphia St Whittier, CA 90601 Directions
Visit the Event Page Event Flyer Categories: Special Events - General
A Night at the Races to Benefit Rett Syndrome
Chinese Auction Door Prizes $10 Horses $10 Entry Fee Tickets available at the door Doors open at 6pm Races start at 9pm Categories: Special Events - General
Oct
24
Thu
Oct 24 @ 9:00 am
WHEN | Thursday, October 24th, 2019 TIME | 9:00am WHERE | Monmouth University: Directions | Website Registration Information
Oct
26
Sat
Date: Saturday, October 26, 2019 Time: 6:00PM-10:00PM Location: Tre Posti, 641 Main Street, St. Helena, CA 94574 Registration & Information
Categories: Special Events - General
Nov
1
Fri
Zumbathon Charity Event for Rett Syndrome
In Honor for Allison
Date: Friday, November 1st Time: 5:00-7:30pm Join us for an evening of instructed Zumba while raising money for Rettsyndrome.org. Admission is $10. Contact Information: Claudia Juarez 817-233-2189 Categories: Special Events - General
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 Categories: Special Events - General
Nov
9
Sat
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.
Categories: Special Events - General
Nov
15
Fri
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 Categories: Special Events - General
Dec
7
Sat
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: [email protected] Categories: Special Events - General
Jan
25
Sat
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 [email protected] Categories: Special Events - General
Jun
13
Sat
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
Categories: Special Events - General
Jun
18
Thu
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 [email protected] or Jennifer Mosca at [email protected] LEARN MOREJul
26
Sun
9th Annual Scramble for a Cure
Date: Sat July 26th 2020 Cost: $300/Team Location: The Chief Golf Course, Bellaire MI Contact: Sue Knight (231) 495-9794 or [email protected] https://www.golfthechief.com/ Information & Registration Categories: Special Events - Golf Tournaments
Jul
30
Thu
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 Categories: Special Events - General
Oct
24
Sat
Raise a Glass Against Rett: Virtual Edition
Date:Saturday, October 24th Time: 8pm EST Be inspired by stories from our community, hear our research update, and learn how you can help create a world without Rett. Join Rettsyndrome.org and families for a Virtual Gala this fall. And raise a glass to overpowering Rett! Information & Registration Categories: Special Events - General
Dec
5
Sat
Vanderbilt Kennedy Center Rett Clinic Town Hall Meeting
Date: Sat, December 5, 2020 Time: 11:00 AM - 12:30 PM Are you wanting to understand the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? Perhaps you would like an opportunity to re-connect and re-center with your Rett community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Saturday, December 5, 2020, at 11am -12:30pm (CT). Join us as Rettsyndrome.org, and the Rett Clinic team at Vanderbilt Kennedy Center discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration Categories: Special Events - Meetings/Symposiums
Hannah Grace Carpenter
Artist Reception Date: December 5 Time: 2:00-4:00pm Location: 148 North Main Street, Downtown Historic Mooresville Important Information Categories: Special Events - General
Feb
26
Fri
Are you wanting to better understand the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? Perhaps you would like to re-connect and re-center with your Rett syndrome community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Friday, February 26, 2021, at 4pm -5:30pm Central time. Join us as Rettsyndrome.org, and the Rett Clinic team at UAB discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
Categories: Special Events - Meetings/Symposiums
Feb
27
Sat
Test your trivia knowledge and support Rett syndrome!
Looking for something fun to do this winter while stuck inside and want to support Rettsyndrome.org at the same time? Get your thinking caps on, gather some friends (virtually) and join us for our winter Trivia Night Virtual Showdown fundraiser! Date: Saturday, February 27 Time: 7pm EST Price: $100 (for a group of 10) Details: Space is limited as we are capping out at 20 groups of 10. The ticket purchaser is the 'team captain' and will need to fill out a link after purchasing tickets with the team member names & email addresses. Please direct any questions to Jackie Ventura at [email protected] Information & Registration Categories: Special Events - General
Apr
30
Fri
We are excited to be able to host the event this Spring! We will be following the guidelines of the CDC and may have to implement social distancing and face coverings dependent upon the CDC guidelines in place at the end of April. Come out and break some clays with us as we raise money for a very special cause. 100% of all tournament proceeds go to RettSyndrome.org! Experienced and Novice shooters are welcome! Date: April 30, 2021 Details: $750 per 4-man team $200 per individual Mulligan Package: 6 Shots for $25 Carts included, ammunition not included Information & Registration
Categories: Special Events - General
May
6
Thu
May 6 @ 9:00 am
Rotary Club of Indialantic - Charity Golf Tournament
Charity Golf Tournament & virtual Gala in support of Rettsyndrome.org. 40% of all proceeds go to Rettsyndrome.org Date: Saturday, May 22, 2021 Course: Spessard Holland at Melbourne Beach Information & Registration Categories: Special Events - Golf Tournaments
May
10
Mon
Mark was a devoted husband, father and friend that touched many lives through his enthusiasm and love of life. Every job, school, team or organization that he was involved with became a part of him. He had a great ability to connect with people and shared his passion for life with everyone that he met. As a father of a daughter with Rett syndrome, Mark did everything he could to make her life better. It is in his honor that we gather his family and friends to celebrate a life well lead and to give to a cause that was close to Mark’s heart. To learn more, you may view the brochure here. Join us on Monday, May 10th, 2021 Due to the Covid-19 pandemic, we will be following the CDC guidelines inclusive of masks & social distancing. 11 – 12pm: Golf registration & Lunch 12:30pm: Shotgun Start 5pm: Tailgate, food truck
SIGN UP AS A FOURSOME OR INDIVIDUAL
Registration/Dinner All sponsors will need to provide company logo/artwork via email to Deb McLaughlin [email protected]. All payments & artwork must be received by May 3rd. Sponsorship If you can’t attend the event you can still make a general donation. Donate Categories: Special Events - Golf Tournaments
Jul
13
Tue
You Can't Miss the Final Samantha Corpus Golf Tournament Samantha's Farewell 15 July 13, 2021 Please join us for the legendary Samantha Corpus Golf Tournament, On Tuesday July 13th at The Blackhawk Country Club, as we will be hosting our 15th and Final Tournament. Due to the Pandemic we had to postpone the tournament last year. In spite of all the uncertainty the outpouring of love and support continued and many of you asked and hoped that we would be able to conclude this epic event in grand style. Information & Registration
Categories: Special Events - Golf Tournaments
Jul
25
Sun
Scramble for a Cure
Date: July 25th, 2021 Details: 18 hole scramble at The Chief Golf Course 7:30am coffee & muffins 8:30am shotgun start Lunch provided by The Pelican's Nest Proceeds go to IRSF Information & Registration Categories: Special Events - Golf Tournaments
Jul
28
Wed
As a rare disease community, we can learn a lot from others further down the road of gene replacement therapy. In this informative conversation with IRSF's CSO, Dr. Dominique Pichard, you'll hear from P.J. Brooks, PhD, Program Director for the Office of Rare Disease Research at the NIH's Center for Advancing Translational Sciences. We'll also hear from CureSMA's Chief Scientific Officer, Jill Jarecki, PhD, who will share what CureSMA learned from their FDA-approved gene therapy clinical trial experience. Join us Wednesday, July 28 at 1 p.m. EDT. Takeaways from this RettEd: - Understand the potential for gene replacement therapy for single-gene disorders like Rett syndrome and learn what is involved in delivering complex treatment molecules to the affected cell. - Understand what NCATS is doing to accelerate clinical trials in rare diseases by moving beyond "one disease at a time" approaches. - Get perspective from another rare disease foundation's gene therapy clinical trial experience. Information & Registration
Aug
20
Fri
Rip it for Rett
The Rip it for Rett, hockey themed golf tournament is a blast, a great round of golf on a great course with really awesome people. What more can you ask for? Find out the details on how to get in on the fun! Join this sibling group as they raise money for IRSF in honor of their sister! Sponsorships and foursomes are still available. Information Registration & Sponsorships Categories: Special Events - Golf Tournaments
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