Rocky Mountain Rett Association

Rocky Mountain Rett Association is dedicated to improving the quality of life for children and their families impacted by Rett Syndrome and Rett-like diseases.

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Family Support Services

Class

Human Services 

Beneficiaries

Families
Females
Children (4-12 years)
Males
People/Families with of People with Developmental Disabilities

Description

RMRA reaches out to educate and support parents of girls with Rett Syndrome. We have a RMRA phone number, email address and website where parents can talk to an RMRA volunteer to get assistance. Moreover, we have an email distribution list where parents can ask other parents questions about their daughter's care. The sharing of information between families is invaluable when caring for a child with RS, and RMRA disperses valuable information--from what equipment is effective with scoliosis to how to obtain state and local assistance, to the sharing of interpersonal stories that give the whole community hope. We also offer all new families a RS handbook and share a list of vetted providers and resources among our network. In addition, we offer social activities where families can deepen relationships and get support. We conduct an annual survey to make sure our services are meeting community need, and we continually strive to improve the quality of life for our girls and their families by providing tailored, compassionate services and support.

Photos

Evidence of Program's Success

Evaluating survey results and talk with families.

Awareness and Education

Class

Education 

Beneficiaries

Disabled
General Public
General Public/Unspecified
People/Families with of People with Disabilities

Description

RMRA has improved awareness of Rett Syndrome by being featured in TV, newspaper, and radio reports. We have done interviews with CBS, ABC, NBC, and recently we did an interview with Libby Weaver from Fox News which can be viewed at:
http://kdvr.com/2012/03/15/new-hope-at-childrens-hospital-for-kids-with-rett-syndrome/. We've also done presentations at churches, organizations and schools to educate community members and professionals about RS. Most medical professionals have no experience with RS, so RMRA mobilizes our parents and volunteers to provide clinician with materials and up-to-date resources regarding RS. We take every opportunity that we have to inform the public about this disorder, and future plans include further awareness campaigns targeting first-level practitioners such as teachers and medical professionals.

Photos

Evidence of Program's Success

Success is measured by the increased number of people who are familiar with Rett Syndrome.

Rett Clinic at Children's Hospital

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Disabled
Disabled, General or Disability unspecified

Description

The Rett Clinic brings together multi-disciplinary medical teams on a scheduled basis to provide an integrated program of consultation and treatment. Given the toll Rett and Rett-like diseases takes on a child's motor skills, it can be incredibly challenging for families to get to all the multiple providers a child with Rett requires. Having access to coordinated, high quality medical care has a significant impact on the lives of Rett families, and that impact is described by a parent in the following: "For the first time, an entire team of doctors, therapists, and other specialists, 14 to be exact, cared for us and Mandy all in one afternoon, and all dedicated to making her life and ours better."
Currently, the clinic is held monthly with a capacity for 10 patients per session, which is well below families' needs for access to service. These sessions consist of new and follow-up treatment by multiple specialists. The Rett Clinic is recognized as a Center of Excellence.

Photos

Evidence of Program's Success

We will be evaluating the success of the program with a survey we will give to families attending the clinic.

Rett Syndrome Research

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Disabled, General or Disability unspecified
People/Families with of People with Developmental Disabilities
People/Families with of People with Disabilities

Description

RMRA continues to support research programs that are managed by two International Rett Syndrome groups, the Rett Syndrome Research Trust (RSRT), and the International Rett Syndrome Foundation (IRSF). All of our research support is made possible by individual and corporate donations.

Photos

Evidence of Program's Success

Program success will be evidenced by girls with Rett Syndrome living better lives.

Key aspects of this profile information have been reviewed by Community First Foundation staff. Each organization is exclusively responsible for the content that appears on the profile page. Community First Foundation offers general guidance as to the purpose of each area but does not require or encourage charities to include anything in particular in each section.