Our Story

The Rocky Mountain Rett Association or RMRA is organized for the primary purpose of funding research for the development of treatments and cures for Rett Syndrome and related MeCP2 disorders. We also promote other related activities that provide support and advocacy to area families.

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

Our History

In 2005, 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. 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. 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. 2010 represented the first full year of operations, with a volunteer board of 15 directors and a slate of 4 officers.
2010 was a year of key achievements for RMRA, including:

  • Completing successful fundraising initiatives:
    • Won Sears One Billion Points Video Contest in November 2010, yielding over $400k in Sears gift cards and cash.
    • Held 4 fundraisers: 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.
  • Developing a communications platform by creating a website.
  • Establishing a national presence by:
    • Assisting with the International Rett Syndrome Foundation conference in Colorado Springs in May.
    • Meeting with key executives from both the International Rett Syndrome Foundation (IRSF) and the Rett Syndrome Research Trust (RSRT)
  • Leading discussion around the creation and funding of a Rett Syndrome clinic at Children’s Hospital Colorado, which was launched in fall of 2011.
  • Continuing to invest in research by awarding $75,000 to RSRT and $25,000 to IRSF.

In 2011, RMRA continued successful fundraising events, funded and launched a Rett Syndrome clinic in partnership with Children’s Hospital Colorado and undertook a major strategic planning process, which this narrative plan represents. RMRA continued to support research and began exploring additional ways to support families in the Rocky Mountain region impacted by Rett Syndrome.

What is Rett? Our Mission, Vision, Values