About RMRA

The Rocky Mountain Rett Association (RMRA) is dedicated to improving the quality of life for children and their families impacted by Rett Syndrome. We provide resources, engage in advocacy, education and awareness efforts, and raise funds to support the search for a cure and to run the Rett Clinic at Children’s Hospital Colorado.

RMRA has historically been a volunteer driven organization, consisting of family members and service providers whose lives are touched by Rett Syndrome.

Our History

Rocky Mountain Rett Association

2018

The 2017 Judi Masters Award honors AlloSource

The Judi Masters Award 2017 honors AlloSource, a company that in its day-to-day work is making miracles happen through tissue donation. AlloSource, through volunteers, matching donations, and even a past-dedicated board member, Chris Wertz, has been a strong supporter of RMRA for many years.
2017

Rett Clinic expands hours for follow up patients

The Rett Clinic started seeing follow up patients since 2014, but the wait list was getting too long. In 2017 the decision was made to add six more mornings per year to dedicate exclusively to follow up patients.

Rett Clinic receives the Rettsyndrome.org Center of Excellence Award

The Rett Clinic at Children’s Hospital Colorado is the proud recipient of the Center of Excellence Award given out by Rettsyndrome.org. Read more about this on our blog.
2015

The 1st Judi Masters award goes to family Benjamin

Family Benjamin was honored with the Judi Masters award. The Benjamins were instrumental in winning the Sears One Billion Points Video Contest and therefore making it possible for RMRA to start the Rett Clinic.
2014

Follow up patients are seen at the Rett Clinic

Four years after its creation, the Rett Clinic sees the need to see follow up patients. In 2014 a total of 51 patients are seen with 19 being follow up patients.
2011

2011 – Rett Clinic was founded

Rett Clinic was founded in fall of 2011 in partnership with Children’s Hospital Colorado. RMRA also continued to invest in research by awarding $75,000 to RSRT and $25,000 to IRSF. RMRA continued successful fundraising events and undertook a major strategic planning process.
2010

National presence

RMRA established a national presence by assisting with the International Rett Syndrome Foundation conference in CO Springs in May and meeting with key executives from the IRSF (International Rett Syndrome Foundation) and the RSRT (Rett Syndrome Research Trust).

2010 – One Billion Points Video Contest won

Family Benjamin submitted a video for the Sears One Billion Points Video Contest and was able to rally the entire Rett community to vote for the video. In November 2010 it was announced that it won, yielding over $400k in Sears gift cards and cash.

2010 – Key year for RMRA

In its first year, RMRA successfully completed four fundraising initiatives the Spaghetti Dinner in April, the Ride-for-Rett in June, the Golf Tournament in July and the signature event, the Walk n’ Roll in August. Together fundraisers raised more than $75,000 in funds for RMRA.

Raising awareness

RMRA laid the ground work for raising awareness and developed a communications platform by creating a website.

2010 – 1st full year of operations for RMRA

2010 represented the first full year of operations, with a volunteer board of 15 directors and a slate of 4 officers.
2009

Rocky Mountain Rett Association was founded

In 2009, the Rocky Mountain Rett Association was incorporated as a Colorado not for profit corporation and subsequently earned tax exempt status under tax code 501(c)3.
2008

Local needs

After several successful years of organizing and fundraising, Colorado Rett families and friends determined they wanted to create an organization that would allow them to better direct the investment of funds raised, while better meeting local needs.
2005

Families come together

Colorado family & friends of girls with Rett Syndrome started to raise funds to support national Rett organizations– supporting research aimed at finding a cure for Rett Syndrome and improving the quality of life for girls and women living with Rett Syndrome.

 

What is Rett? Our Mission, Vision, Values