RMRA’s Roll 4 Rett

Join us for our First Annual Roll 4 Rett Fundraiser! On Sunday, October 6, 2024, we will roll 1.4 miles around Johnston Reservoir at Clement Park, Littleton, CO. Festivities begin at 10 a.m., and the Roll starts at 11 a.m.

This is a rain-or-shine event!

LOCATION:

Clement Park, 7306 W Bowles Ave, Littleton, CO. Shelter O, P and Q.

SCHEDULE OF EVENTS:

10 AM: All roll participants arrive to check in, decorate their wheels (supplies will be provided), and meet other participants. If you are not raising funds this year, join us to make signs and cheer on the rollers!

11 AM: Official welcome and roll start time! Find your place on the path and get ready to ROLL!

11:30 AM: Lunch is served, and the celebration begins! Eat some yummy food from Moe’s Original BBQ, socialize with friends, and dance to the tunes of DJ Trip! There is an adaptive playground available and we also have a friendship bracelet-making sponsored by Acadia Pharmaceuticals.

FEE:

This event includes a free lunch and a goodie!

We encourage you to create a fundraising page to raise money for the Rett Clinic. The minimum goal is $50/individual and $75/family to participate in the event. See the instructions below on creating a fundraising page.

Alternatively, you can pay the fee of $50/individual or $75/family to participate in this event.

HOW TO START YOUR FUNDRAISING PAGE:

You have a fundraising commitment of $50 (individual) or $75 (family).

1. Click "Join the Event” then “Get Tickets" and select the option "Start a Fundraiser"

2. After registration, you'll be redirected to the Colorado Gives page to create your page.

3. Once your page is set up and approved by the RMRA team (you'll get an email about the approval), you can ask your friends to text roll4rett2024 to 844-844-6844, and they can then select your fundraising page to support your fundraising efforts. Alternatively, give them the URL you set up for your fundraiser. Don't forget to also share the URL of your fundraising page on social media or by email.

4. KEEP IN MIND: If you do not achieve the goal by the deadline (one day before the event), you agree to pay the remainder yourself.

As with 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.

Have any questions? Contact Heidi at Heidi@rmrett.org.

Thank you to our sponsors!

R4R’s Girls on the Rise 2024

Sunday, August 4, 2024 from 10AM-2PM

Little Beach Park in Minturn, CO

Fly-fishing Casting Clinic & more for girls age 7 and up

GIRLS ON THE RISE will empower young women through fly fishing and philanthropy.

We will spend the day cultivating and encouraging young women to be leaders and stewards of the water and in philanthropy. Together, we will experience yoga, fly fishing, and a small live auction benefiting the Rett Clinic at Children’s Hospital Colorado.

This event is limited to 20 participants. We encourage participation for girls age 7 and up. Kids will be divided into age groups. The fee for this event is $25/girl and includes:

• YOGA donated by Jocelyn Laferriere

• CASTING CLINIC provided by Eagle River Outfitters

• LUNCH donated by Moe’s Original BBQ

• LIVE AUCTION by Brett Barker

For questions, please contact Jessica.

We would love to host our Rett girls and siblings. Contact Jessica for questions.

This event is planned by Risers 4 Rett, please click on the link below to learn more and to register.

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!

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

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:

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.

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.

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.

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 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.

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.

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.

Thank you to our sponsors!

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!

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!

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.