Upcoming Events
ASCEND 2024
ASCEND 2024 - the Rett Syndrome National Summit
The International Rett Syndrome Foundation is proud to present the ASCEND 2024 Rett Syndrome National Summit. Designed to unite us as a community, this event will bring together parents, families, clinicians, researchers, and Rett organizations from around the world.
ASCEND 2024 consists of two parts: a family conference and scientific meeting. During the 2 1/2-day family conference, you’re invited to:
LEARN.
Sessions, breakouts, and keynotes will cover the latest Rett syndrome research and treatment advancements, care topics, and more, all presented by Rett syndrome experts.
CONNECT.
Attend social activities every evening, including a welcome reception and the Purple Party, that provide ample opportunity to connect with friends, new and old.
GROW.
A dedicated Exhibitor Hall lets you meet with industry partners and learn about the newest products, services, and treatments available to your loved one with Rett syndrome.
Look for more information on the summit agenda, speakers, social activities, and more in the coming months!
Your registration for the 2.5-day family conference includes breakfast and lunch each day, evening social activities including a Welcome Reception and the Purple Party, and access to all plenary presentations, concurrent breakout sessions, and the exhibitor hall.
Lock-In Early Bird Pricing Now (extended until 3/15/24)
Registration starts at just $225 per person for families & is FREE for individuals with Rett syndrome!
COLORADO FAMILIES! Are you wanting to go to Ascend but on a budget?
Did you know if you are on the CES waiver, you have benefits under Parent Education that will pay for the ticket for you? (If you choose to take your Rett child they are free, and there will be respite). If you don’t have CES, there are other ways to get it, such as through some of the other waivers and programs. You have to ask AND do it now! It may take time for it to get processed, so reach out to your people ASAP!
If they aren’t sure what you are talking about, let them know that “Yes, under the CES waiver, Parent Education funds will cover it!” For more information, contact us (Heidi Hedges or Lori Schroath).
RMRA is partnering with IRSF this year and we would love to have all our families there.
"We are very excited that the International Rett Syndrome Foundation is bringing ASCEND 2024 here to our beautiful state of Colorado! As a father of a special little girl with Rett Syndrome, I invite all families impacted by Rett to come and join us at this amazing conference and connect with many others in this special community of ours. We want to see all of you on the front range of the Rocky Mountains and experience ASCEND 2024!"
Jim Schroath, Board President, Rocky Mountain Rett Associaction
Thank you to the ASCEND 2024 Sponsor:
Risers 4 Rett Tournament Fall 2024
Risers 4 Rett Fall 2024 Fly Fishing Tournament
September 19-22, 2024
We will accept up to 24 two-person fly-fishing teams. Choose a friend to join you for some fun, healthy competition for a great cause. Don’t have a teammate yet? No problem! Individual participants are always welcome—we’ll pair you up at the event. Our Risers 4 Rett committee organizes this event. Please click the “More Info” button below to get details about this and other events.
Risers 4 Rett Tournament Spring 2024
Risers 4 Rett Spring 2024 Fly Fishing Tournament
April 25-28, 2024
We will accept up to 30 two-person fly-fishing teams. Choose a friend to join you for some fun, healthy competition for a great cause. Don’t have a teammate yet? No problem! Individual participants are always welcome—we’ll pair you up at the event. This event is organized by our Risers 4 Rett committee. Please click the “More Info” button below to get details about this and other events.
RMRA’s Adaptive Ski Day at Breckenridge
RMRA’s Adaptive Ski Day at Breckenridge
Because of incredible organizations like the BOEC, individuals with Rett Syndrome or any disability can experience one of Colorado's favorite sports! Their trained instructors ensure that all skiers have an unforgettable and safe time on the slopes.
RMRA's family outreach committee is hosting the Adaptive Ski Day, welcoming 5-8 families for full-day or half-day sessions.
Date: Friday, April 12th, 2024 - Choose between a full-day or either morning/afternoon session.
Location: Breckenridge Ski Resort Supported by BOEC (Breckenridge Outdoor Education Center)
Cost:
Full day: $235
Half day: $150
What's included:
Ski ticket for the Rett individual
Adaptive gear and helmet if needed (skis or sit-ski)
At least two adaptive ski instructors at all times
Ski attire if needed (pants, jacket, goggles, boots, etc.)
Must register by April 3rd, 2024.
To register or to ask any questions, please email or text/call Heidi Hedges-Greenall at Heidi@rmrett.org or 206-484-7365. If you are interested and qualify, the BOEC also offers scholarships to assist with costs.
Don't miss out on this fun and thrilling opportunity to let your child experience the freedom and fun of skiing! Check out photos from Hallie, Ellie, and Zoey's 2023 Adaptive Ski Trip for a glimpse of the fun!
Mardi Gras Fête 2024
6th Annual
Mardi Gras Fête
Saturday, February 24, 2024
6:30 PM - 9:30 PM
Mercury Cafe, 2199 California Street, Denver, CO 80205
EVENT IS SOLD OUT
It’s almost that time of year again! Please join us to celebrate our Rett Families and come together as a community to raise the necessary funds needed to operate the Rett Clinic at Children’s Hospital Colorado. Our Mardi Gras Fete is once again at the unique, historic Mercury Cafe right in downtown Denver.
👑 Mardi Gras Entertainment by Miss Monroe and the Rhinettes
🥘 New Orleans-themed dinner
📣 Our special guest this year will be Paige Nues from the International Rett Syndrome Foundation
👨👩👧 Connect with other Rett families and hear their inspiring stories
✋ Bid on incredible items in our live auction
🏆 Judi Masters Award presentation
TICKETS:
$75/person or $650 for an entire table (for 8 people).
Costumes are encouraged but optional.
If you cannot participate in this event, we would appreciate your support by donating directly to RMRA (choose ticket option DONATION) or by sponsoring someone else who cannot attend due to financial limits (choose ticket option SPONSOR SOMEONE ELSE).
Special Guest
Paige Nues
International Rett Syndrome Foundation, Family Empowerment Director
Paige leads initiatives that build bridges between patient families, clinicians, scientists and industry to stimulate participation and engagement in research activities, Centers of Excellence, and foster patient-centered research development and design. She also provides a safety net of accurate information through education programs designed to empower families, caregivers, and support teams at all ages and stages, including organ donation for Rett research. Paige served on the Board of Directors as a volunteer Regional Representative and is the parent founder of Katie’s Clinic for Rett and Related Disorders at UCSF Benioff Children’s Hospitals. She enjoyed a successful career in sales, marketing, and business development with Fortune 100 companies prior to her daughter Katie’s diagnosis of Rett syndrome in 2003, when she turned her full energy and passion to solving the mysteries of Rett syndrome. She gratefully accomplishes this life work with the full support of her husband and 3 beautiful daughters.
WE ARE THE VILLAGE!
The Rett Clinic at Children’s Hospital is funded by Rocky Mountain Rett Association and YOU.
It’s up to us to ensure the operation of the Rett Clinic for years to come.
LAISSEZ LES BONS TEMPS ROULER!
Thank you to our sponsors:
2nd Annual RMRA Village BBQ Party
2nd Annual RMRA Village BBQ Party
RMRA is thrilled to extend a heartfelt invitation to all our Rett families and friends to a fantastic BBQ Party that will truly commemorate Rett Syndrome Awareness Month most memorably! Come and join a vibrant community of families, dedicated Rett Clinic providers, and passionate RMRA supporters for a fun get-together filled with delectable food and the joy of being in the company of your very own Rett Village! Remember to don your most striking shade of purple to promote Rett Syndrome Awareness Month. We will take a group picture, so WEAR YOUR PURPLE or your CURE RETT shirts!
This is a free event sponsored by the RMRA board. The event is rain & shine.
Please register by Monday, September 25, so that we can estimate our food purchases.
We have fun activities planned for kids, including a Cotton Candy Machine
DJ Trip (aka board member Justin Allen) will spin the tunes.
Board member Sarah Ahlstrom will give Adaptive Toys demonstrations and lessons.
Representatives from Acadia will be on-site to answer questions about DayBue. HopeKids Colorado, a non-profit for kids with disabilities, will attend, too.
Katie's Confections will provide delicious, homemade desserts.
Thank you to our sponsors:
Risers 4 Rett Tournament Fall 2023
Risers 4 Rett Fall 2023 Fly Fishing Tournament
September 21-24, 2023
We will accept up to 30 two-person fly-fishing teams. Choose a friend to join you for some fun, healthy competition for a great cause. Don’t have a teammate yet? No problem! Individual participants are always welcome—we’ll pair you up at the event. This event is organized by our Risers 4 Rett committee. Please click the “More Info” button below to get details about this and other events.
Girls on the Rise 2023
R4R’s Girls on the Rise 2023
August 6, 2023 from 10AM-2PM
Little Beach Park in Minturn, CO
Fly-fishing Casting Clinic & more for girls age 7 + up
GIRLS ON THE RISE will empower young women through fly fishing and philanthropy.
This event is planned by Risers 4 Rett.
Risers 4 Rett Women's Fly Fishing Event 2023
4th Annual
R4R (Risers 4 Rett) Women's Fly Fishing Event 2023
August 3rd - 6th, 2023
EVENT IS SOLD OUT - GET ON THE WAIT LIST NOW
The 4th Annual Women’s Risers 4 Rett Fundraiser will be held in Minturn, the quaint historic mountain town in the Vail Valley.
Our purpose is to create a time and space for women to enjoy the outdoors and gather together in a fun and healthy setting. All while supporting a charity that specifically affects many young girls.
Risers 4 Rett Tournament Spring 2023
Risers 4 Rett Spring 2023 Fly Fishing Tournament
April 20-23, 2022
We will accept up to 24 two-person fly-fishing teams. Choose a friend to join you for some fun, healthy competition for a great cause. Don’t have a teammate yet? No problem! Individual participants are always welcome—we’ll pair you up at the event. This event is organized by our Risers 4 Rett committee. Please click the “More Info” button below to get details about this and other events.
Mardi Gras Fête 2023
5th Annual
Mardi Gras Fête
Saturday, February 25th, 2023
6:30 PM - 9:30 PM
Mercury Cafe, 2199 California Street, Denver, CO 80205
⬇️ FOR BRUCE SPRINGSTEEN TICKETS SCROLL DOWN! ⬇️
It’s almost that time of year again! Please join us to celebrate our Rett Families and come together as a community to raise the necessary funds needed to operate the Rett Clinic at Children’s Hospital Colorado. Our Mardi Gras Fete is once again at the unique, historic Mercury Cafe, right in downtown Denver.
👑 Mardi Gras Entertainment by Miss Monroe and the Rhinettes
🥘 New Orleans themed dinner
📣 Hear from your favorite Rett Clinic doctor Dr. Tim Benke, Medical Director of the Rett Clinic
👨👩👧 Connect with other Rett families and hear their inspiring stories
✋ Bid on incredible items in our live auction
🏆 Judi Masters Award presentation
TICKETS:
$75/person or $650 for an entire table (for 8 people).
Costumes are encouraged, but optional.
If you cannot participate in this event, we would appreciate your support by donating directly to RMRA (choose ticket option DONATION) or by sponsoring someone else who cannot attend due to financial limits (choose ticket option SPONSOR SOMEONE ELSE).
WE ARE THE VILLAGE!
The Rett Clinic at Children’s Hospital is funded by Rocky Mountain Rett Association and YOU.
It’s up to us to ensure the operation of the Rett Clinic for years to come.
LAISSEZ LES BONS TEMPS ROULER!
💥ENTER TO WIN💥
BRUCE SPRINGSTEEN CONCERT TICKETS!
Enter our drawing to WIN TWO TICKETS IN A SUITE to groove to THE BOSS’ CLASSICS on March 2, 2023 at the Ball Arena in Denver. Includes FREE PARKING and VIP ENTRANCE.
Tickets for drawing are only $100
Value: $2000
Only 100 tickets will be sold, so your chance of winning is 1:100. UPDATE: we received another set of tickets, so your chance of winning is 1:50!!!
Date: 7:30 PM on Thursday, March 2nd 2023
Location: Ball Arena, Denver
What: TWO tickets with a private suite #23, parking pass, VIP entrance (at south & north side). Parking lot opens three hours before the event, VIP entrance opens one hour before the event. Suite holders have access to the club level for food & drinks.
Bruce Springsteen and the E Street Bank 2023 international tour
Denver is one of Bruce Springsteen and The E Street Band's 2023 international tour spots in the United States. The shows will mark Springsteen and The E Street Band’s first tour dates since February 2017, and their first in North America since September 2016. Enjoy two private seats as you groove to The Boss' classics.
Drawing will be held at RMRA's Mardi Gras event on February 25th. You do NOT have to participate in RMRA’s Mardi Gras event to purchase your drawing ticket or to win.
All proceeds of the drawing benefit the Rett Clinic at Children’s Hospital Colorado.
Thank you to our sponsor!
Ride 4 Rett – Spin Class Fundraiser
RMRA and High Ride Cycle are teaming up to provide a spin class fundraiser to support the Rett Clinic at Children's Hospital Colorado.
This will be the fastest Fundraiser ever! We'll ride our hearts out to the upbeat and motivating High Ride class and follow it with a post-ride massage and product giveaways from ioVia. We will walk with a full heart, calories burned, and a sweet piece of Ride 4 Rett apparel.
Location: High Ride Cycle studio in Northglenn, 2145 E 120th Ave H, Northglenn, CO 80233
High Ride incorporates cardio, weights, and resistance to provide a full body workout. A combination of music, lighting, and energy help create a positive and rewarding experience for each rider. It’s a party on a bike! Our experienced and motivated instructors will guide you through an energizing 45 minute workout whether you’re an expert or a beginner. Get your sweat on with High Ride Cycle!
Each person has a fundraising commitment of $250. You have 2 options:
- Pay the $250 immediately to secure a bike for yourself (or someone else)
- Start your own fundraising page and share with your friends on social media or email your friends directly to raise funds. Registration is done via Eventbrite and fundraising page is done via Colorado Gives. You can also join an existing team or create your own team (you’ll still need to create a fundraising page and a team page). Once your page is set up, you can share the url or ask your friends to text ride4rett2023 to 844-844-6844 and then select your fundraising page to support your fundraising efforts. If you do not achieve the goal by the deadline (one day before the event) you agree to pay the remainder yourself.
Or, if you want to support someone participating in this fundraiser, click donate and select their fundraising page (or team page).
As all RMRA events, the event helps sustain the Rett Clinic at Children’s Hospital Colorado, which supports families dealing with this terrible disease.
Each $1,000 raised allows a Rett child to visit 15 providers at the Rett Clinic at Children’s Hospital.
Come in at 10:30 AM for a chair massage. Class will start at 11 AM! Check out vendors or stick around for a massage after class too.
Included in your registration:
Event T-shirt
Vendor swag
Personal fundraising webpage
Thank you to our sponsor!
RMRA Village BBQ Party
RMRA Village BBQ Party
RMRA is excited to invite all our Rett families and friends to a BBQ Party to celebrate the Rett Clinic’s 10th Anniversary and Rett Syndrome Awareness Month! Join other families, Rett Clinic providers and RMRA supporters for food, fun and hanging out with your Rett Village!
FOOD, MUSIC & FUN HOSTED AND PROVIDED BY THE RMRA BOARD
WE CAN’T WAIT TO SEE YOU THERE!
Please RSVP by October 3rd and let us know you’re coming.
Risers 4 Rett Tournament Fall 2022
Risers 4 Rett Fall 2022 Fly Fishing Tournament
September 22-25, 2022
>>>EVENT IS SOLD OUT - GET ON WAIT LIST<<<
We will accept up to 24 two-person fly-fishing teams. Choose a friend to join you for some fun, healthy competition for a great cause. Don’t have a teammate yet? No problem! Individual participants are always welcome—we’ll pair you up at the event.
Girls on the Rise
R4R’s Girls on the Rise 2022
August 14th, 2022 from 10AM-2PM
Little Beach Park in Minturn, CO
Fly-fishing Casting Clinic & more for girls age 7 + up
GIRLS ON THE RISE will empower young women through fly fishing and philanthropy.
This event is planned by Risers 4 Rett.
R4R Women's Fly Fishing Event 2022
3rd Annual
R4R (Risers 4 Rett) Women's Fly Fishing Event 2022
August 11th - 14th, 2022
EVENT IS SOLD OUT - GET ON THE WAIT LIST NOW
After the success of our inaugural Women's Fly Fishing event in July of 2020 and an even bigger event in 2021, we are excited to offer another Women’s Fly Fishing event in 2022
The event will again be in Minturn, the quaint historic mountain town in the Vail Valley. Fishing is unique in Minturn, located on the beautiful Eagle River surrounded by National Forests. Our purpose is to create a time and space for women to enjoy the outdoors and gather together in a fun and healthy setting. All this while supporting a charity (RMRA!) that specifically affects many young girls (more so than boys!).
Risers 4 Rett Tournament Spring 2022
Risers 4 Rett Spring 2022 Fly Fishing Tournament
April 21-24, 2022
EVENT IS SOLD OUT - GET ON THE WAIT LIST NOW
Mardi Gras Fete & Rett Clinic 10 Year Anniversary Celebration
You can participate in the drawing regardless if you are attending the Mardi Gras Fête!
The last ten years have been an adventure for all of us! We have stuck together and supported each other through it all. We are honored to have you as part of our Rett Village. Together, we will continue to navigate all that comes our way.
Dr Alan Percy MD is the “father” of Rett Syndrome in the US. He started the first Rett Syndrome clinic in the US at Baylor/Texas Childrens before moving to the University of Alabama. He pioneered assessments of Rett Syndrome, initiated the NIH-funded Natural History Study (in 2003), has published over 130 papers on Rett Syndrome, and been a leader and participated in all of the clinical trials in Rett Syndrome. Alan has seen and taken care of more individuals with Rett Syndrome than anyone on the planet. Alan has been instrumental in offering advice at every step of the way for our Rett Clinic journey. Alan helped us kick off the Rett Clinic by attending one of our first sessions of the Rett clinic in 2012. Alan is mentor and friend of Tim Benke, your Rett clinic director. Alan knows more about Rett Syndrome than anyone (except Jane, see below).
Ms Jane Lane RN, BSN has been the right-hand person of Alan Percy for over 30 years. She has been instrumental in creating a successful, caring, and learned clinic environment for individuals with Rett Syndrome. With Alan, she has participated in all of the clinical trials in Rett Syndrome. She was project manager for the NIH-funded Natural History Study. Families across the country have utilized Jane as a 24/7/365 resource for their daughters (and sons) with Rett Syndrome throughout this time. Jane has published (40+ papers) in Rett Syndrome, focusing on issues that affect families most. Jane helped us kick off the Rett Clinic by attending one of our first session of the Rett clinic in 2012. She has been and continues to be a resource for our RN Clinic coordinators since we began. Jane knows more about Rett Syndrome than anyone (except Alan).
Thank you to our sponsors!
Ride 4 Rett – Spin Class Fundraiser
For the third time, RMRA is teaming up with High Ride Cycle, a gym in Denver to provide a Spin Class Fundraiser. This time it’ll be the High Ride Cycle studio in Northglenn.
Registration & Fundraising Details:
Location: 2145 E 120th Ave H, Northglenn, CO 80233
High Ride incorporates cardio, weights, and resistance to provide a full body workout. A combination of music, lighting, and energy help create a positive and rewarding experience for each rider. It’s a party on a bike! Our experienced and motivated instructors will guide you through an energizing 45 minute workout whether you’re an expert or a beginner. Get your sweat on with High Ride Cycle!
Each person has a fundraising commitment. Create your own fundraising page and share with your friends on social media or email to raise funds. As all RMRA events, the event helps sustain the Rett Clinic at Children’s Hospital Colorado, which supports families dealing with this terrible disease.
Each $1,000 raised allows a Rett child to visit 15 providers at the Rett Clinic at Children’s Hospital.
Come in at 10:30 AM for a chair massage. Class will start at 11am! Check out vendors or stick around for a massage after class too.
Included in your registration:
Event T-shirt
Vendor swag
Personal fundraising webpage
In the meantime, read our blog and check out pictures about the 1st Ride 4 Rett and the 2nd Ride 4 Rett.
This year we will not have teams riding, just individuals.
Thank you to our sponsors!
Risers 4 Rett Tournament Fall 2021
Risers 4 Rett Tournament Fall 2021
September 23rd - 26th, 2021
EVENT IS SOLD OUT - GET ON THE WAIT LIST NOW
R4R Women's Fly Fishing Event 2021
2nd Annual
R4R Women's Fly Fishing Event 2021
August 12th - 15th, 2021
EVENT IS SOLD OUT - GET ON THE WAIT LIST NOW
After the success of our inaugural Women's Fly Fishing event in July of 2020, we are excited to offer a longer and bigger event in 2021.
The event will again be in Minturn, the quaint historic mountain town in the Vail Valley. Fishing is unique in Minturn, located on the beautiful eagle river surrounded by National Forests. Our purpose if to create a time and space for women to enjoy the outdoors and bring women together in a fun and healthy setting, while supporting Rocky Mountain Rett Association, a charity that specifically affects many young girls (more so than boys!).
The fee for this event is $1000 per person and includes:
* 3 Nights/4 days of lodging at Minturn Inn and Eagle River Inn
* All food (breakfast, lunch, dinner) & drinks
* Fly fishing with access to world-class private waters
* Hiking in the gorgeous Vail valley
* Professional fishing guides and casting clinic at Minturn Anglers, all aspects of fly fishing instructions
* Yoga at Anahata Yoga CO
* Wine tasting
* Small town fun in Minturn, a historic Colorado town
For questions, please contact Jessica Lindsley.
Read all about the 1st annual Women’s R4R Fly Fishing event in 2020 and see more pictures on our What a catch page.
For questions, please contact Jessica.
R4R Spring 2021 Fly-Fishing Tournament
R4R Spring 2021 Fly-Fishing Tournament
EVENT IS SOLD OUT - GET ON THE WAIT LIST NOW
Sponsored by:
We will accept up to 24 two-person fly-fishing teams. Choose a friend to join you for some fun, healthy competition for a great cause. Don’t have a teammate yet? No problem! Individual participants are always welcome—we’ll pair you up at the event. Just contact Jessica at Jessica.lindsley@rmrett.org.
Your fee includes:
Lodging at the cozy Almont Resort
Food & Drinks: breakfast, lunch and dinner every day as well as beverages on Friday and Saturday evening
Access to world-class private waters
Professional fishing guides
Awards for winners
Location
Almont, Colorado is where the East River and the Taylor River meet to form the mighty Gunnison! The beauty here is unsurpassed…no wonder it’s one of Colorado’s premier fishing spots!
Located just outside Gunnison, Colorado, at the beautiful Almont Resort, our event is one to remember—fundraising has never been so beautiful and relaxing. Thanks to our supporters at Almont Resort and Three Rivers Resort we have access to top notch guides and breathtaking views on trout-rich waters!
A portion of the event might happen on US. Forest Service land.
For more information and to register head on over to our Risers 4 Rett website!
Virtual Mardi Gras Fête
This Year, We’re Taking Our 3rd Annual Mardi Gras Fete Online!
Friday, February 19th, 2021
6:30pm-7:30pm
If you purchased a ticket, you should have received an email from Jessica.Lindsley@rmrett.org on Thursday 2/18 or Friday 2/19 including the zoom link. If you have any technical difficulties, please email Jessica.
Instead of gathering in person this year, we’re hosting a virtual party that will be a fun-filled event for the whole family. More than ever, it’s important to come together as a community to raise the necessary funds needed to operate the Rett Clinic at Children’s Hospital Colorado.
Hear from your favorite Rett Clinic doctors
Dr. Tim Benke, Medical Director of the Rett Clinic
Dr. Margarita Saenz, Pediatric Medical Geneticist
Connect with other Rett families and hear their inspiring stories
Bid on incredible items in the auction
Judy Masters Award presentation to Bob and Cathy Shorma
Plus, there’s a chance to win a 1-week condo rental in beautiful Maui (scroll down!)
BUY YOUR EVENT TICKETS NOW
$50 for one or $75 for two. Each ticket receives a unique link to the online event.
Each ticket includes THREE entries for a chance to win a 1-week condo rental in Maui!
Costumes are encouraged, but optional. Zoom attire and etiquette appreciated and required.
WE ARE THE VILLAGE!
The Rett Clinic at Children’s Hospital is funded by Rocky Mountain Rett Association and YOU.
It’s up to us to ensure the operation of the Rett Clinic for years to come.
PARTICIPATE IN THE DRAWING FOR THE FREE WEEK IN MAUI
You do not have to be present to win. Winner will be contacted by email/phone and will be announced on our website and on our social media pages.
MAUI CONDO DETAILS (4,500 VALUE!)
• 2 Bedroom, 2 Bath Condo at the Kaanapali Alii Resort in Maui
• Sleeps up to 8, Full Kitchen, located on 1 of 3 TOP RATED BEACHES in the World.
• Tennis Courts, Workout Facility, Pool/Jacuzzi and much more available onsite.
Airfare not included.
ORDER YOUR WINE
To make the virtual Mardi Gras Fete even more special, you can now order your wine for this event from ONEHOPE and double your fundraising efforts!
ONEHOPE is proud to donate 10% of proceeds from the purchases to RMRA. The wine will be conveniently shipped to your location in time for the event.
Interested in Sponsoring this event? Please download this information sheet and contact us.
Thank you to our sponsors
Laissez les bons temps rouler!
Risers 4 Rett Tournament Fall 2020
Risers 4 Rett Tournament Fall 2020
September 24th - 27th, 2020
EVENT IS SOLD OUT
Town Hall - Rett Syndrome Clinic at Children’s Hospital Colorado
Are you having difficulty understanding 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?
We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting – live-streamed – on Saturday, September 19, 2020, at 10am - 11:30am (MT).
Join us as Rettsyndrome.org, the Rett Clinic team at Children’s Hospital Colorado, and members from the Rocky Mountain Rett Association (RMRA) discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.
Then during the last half hour, we’ll be taking your pre-submitted questions. Please submit your questions during registration; however, if one comes to mind after you have registered, email it to Paige Nues.
Guest Presenters:
Children's Hospital Colorado: Dr. Tim Benke, Rett Clinic Medical Director & Tristen Dinkel, Rett Clinic RN Coordinator
Rocky Mountain Rett Association
Rettsyndrome.org State Representative: Heidi Hedges
Rettsyndrome.org: Paige Nues, host
There is no fee to attend this Town Hall, but pre-registration is required.
Women's Fly Fishing Event 2020
Women's Fly Fishing Event 2020
July 24th - 26th, 2020
EVENT IS SOLD OUT
Minturn, CO, the quaint historic mountain town in the Vail Valley
We are excited to offer a women’s only fly fishing event in 2020.
Risers4Rett (R4R) is a fund raising arm of RMRA, the Rocky Mountain Rett Association, having raised over $500,000 for the Rett Clinic at Children's Hospital Colorado in the past 8 years by hosting 12 successful events. R4R runs 100 professionally guided fly fishing trips annually and is excited to now offer the 1st annual Women's Fly Fishing event in Minturn, the quaint historic mountain town in the Vail Valley. Fishing is unique in Minturn, located on the beautiful eagle river surrounded by National Forests. Our purpose if to create a time and space for women to enjoy the outdoors and bring women together in a fun and healthy setting, while supporting a charity that specifically is about young girls.
Space is limited to 10 people. We will start a wait list if more people are interested.
The fee for this event is $500 per person and includes:
Lodging at Minturn Inn, a charming ten bedroom B&B
All food (breakfast, lunch, dinner) & drinks
Fly fishing with access to world-class private waters
Professional fishing guides and casting clinic at Minturn Anglers, all aspects of fly fishing instructions
Yoga at Anhata Yoga Studio
Wine tasting
Small town fun in Minturn, a historic Colorado town
For questions, please contact Jessica.
R4R Summer Challenge 2020
The Risers 4 Rett committee invites you to participate in the first ever Risers 4 Rett Summer Challenge. This FREE challenge series starts on June 1st and runs through September 20th taking us right up to the Fall Risers 4 Rett tournament. Participants will have two weeks to complete each challenge, 8 challenges total. It is our hope that a little friendly competition and fishing will infuse some energy into your summer.
This challenge is FREE and you can win cool R4R gear!
Risers 4 Rett Spring 2020 Tournament
Risers 4 Rett Tournament Spring 2020
April 23rd - 26th, 2020
Sponsored by:
EVENT IS CANCELED
As you have potentially anticipated and understand, we must cancel the 2020 Spring Risers 4 Rett charity fly fishing event due to COVID-19.
We still need your help! As you know, your past donations and ongoing support have made the spring Risers 4 Rett Fly Fishing Tournament a huge success. The Risers events are the main source of funding that keeps the Rett Clinic at the Children’s Hospital-Colorado operating and helping our Rett girls and families.
This spring is no different. Now, we are hoping we can count your entrance fees as donations. Despite these tough times there are people who still need our help, and donating all or a portion of your entrance fee will go a long way to help the Rett clinic during this crisis. Your donation will be 100% tax deductible.
In addition to your donations, we will raise funds through an online auction the weekend of April 23-25th (details forthcoming). Our hope is that you promote and share the link with many of your friends, family and associates encouraging them to participate. Even during tough times, let’s all RISE to help others.
Please contact us at info@rmrett.org, to work out the confidential details of any full or partial donation or refund.
Stay safe, be diligent, and we look forward to seeing you on the water at future events!
Mardi Gras Fête
Saturday, February 29th, 2020, 6pm-9:30pm
Mercury Cafe 2199 California St, Denver CO
Sponsored by:
Join us for our 2nd Annual Mardi Gras Fête!
Dance the night away to the Queen City Jazz Band
Enjoy delicious local food from Cafe Mercury
and
An amazing live Auction
Funds benefit the Rocky Mountain Rett Association and the Rett Clinic at Children’s Hospital Colorado.
Costumes are encouraged, but optional.
$75 a ticket includes dinner and drinks.
Sponsor a table for eight people to receive additional benefits. See ticket information for details.
At the event we will also draw a winner for the “Win a Week in Maui” contest. You do not have to be present to win.
Laissez les bons temps rouler!
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Webinar: Rett Syndrome – Overview & Current Clinical Trials
This is a webinar that will be available on the Rocky Mountain Rett Association’s Facebook page.
Dr. Timothy Benke, Director of Resarch, Neuroscience Institute and Rett Clinic Director, Children’s Hospital Colorado will talk about the following topics:
October 16th: Overview of Clinical Trials
– what is a trial
– what are the types of trial
– how do they get set up
– what does participation look like (consent, etc)
November 20th: Current Trials in Rett Syndrome & CDKL5
Please submit your questions prior to the webinar on Facebook or email them to info@rmrett.org.
Ride 4 Rett – Spin Class Fundraiser
RMRA is teaming up with High Ride Cycle, a gym in Denver on Sheridan Blvd to provide a Spin Class Fundraiser.
Teams will ride together and cheer each other on! We will have two 45 minute classes. The first one will start at 12:30 pm and the second one will begins at 1:15 pm.
Registration & Fundraising Details:
Location: High Ride Cycle, 1711 Sheridan Blvd Denver 80214
High Ride incorporates cardio, weights, and resistance to provide a full body workout. A combination of music, lighting, and energy help create a positive and rewarding experience for each rider. It’s a party on a bike! Our experienced and motivated instructors will guide you through an energizing 45 minute workout whether you’re an expert or a beginner. Get your sweat on with High Ride Cycle!
Each person has a fundraising commitment of $250. Create your own fundraising page through Flipcause (click button below) and share with your friends on social media or email to raise funds.
Included in your registration:
Event T-shirt
Vendor swag
Professional fundraising support and personal fundraising webpage
Sign up as a team of 4 for additional perks!