Rett Resources

If you know of a resource that would be helpful to have listed here, please let us know.

Read blogs about Rett Resources

This is a list of resources for Rett families. Please be aware that we do not endorse any companies listed here, so please research before doing business with them. If you know of a resource that would be helpful to have listed here, please get in touch with us.

More resources are available on the Rettsyndrome.org website – regional for CO and national. And don’t forget to stay in touch with us on social media and sign up for our newsletter!

Adaptive Lifestyle Options/Adaptive Sports/Activities        

Camps in CO, NH, TX and more – Adam’s camp

Ski Programs

Adaptive Bikes

  • Freedom Concepts Inc.: Riding - all ages, all riders, all abilities

  • Rifton - Adaptive Tricycles

  • Two Angles Foundation: The mission of the Two Angels Foundation is to increase the recreational opportunities for children with physical disabilities, inspiring them to lead the most inclusive and active lives possible. They are giving out grants for Adaptive Bikes.

Regional - Denver Metro

  • CFCE - Colorado Foundation for Conductive Education - camp Loveland and Arvada: To provide opportunities for individuals with motor challenges to achieve optimal physical, cognitive, and social independence through the application of Conductive Education.

  • Camp Paha Lakewood: Camp Paha is a unique summer day camp for children and young adults ages 6-25 with disabilities living in Lakewood and surrounding communities. Enjoy swimming, sports, games, nature, music, sensory, arts, crafts, and field trips in a safe, challenging, and fun environment. Camp Paha is licensed by the State of Colorado as a childcare program.

  • Butterfly Pavilion: Butterfly Pavilion is the first stand-alone Association of Zoos and Aquariums-accredited non-profit invertebrate zoos worldwide. Our immersive exhibits provide guests the opportunity to discover the wonders of nature's hidden heroes through hands-on, interactive experiences catered to all ages.

Regional - Southern CO

  • Achilles Pikes Peak partners able-bodied runners with physically challenged athletes

  • Challenger Baseball – contact Roger Hamilton at 719-290-1052 or email challenger@coloradospringslittleleague.com

  • Colorado Springs: Soccer – Rush Pikes Peak: Thunder Program (contact Brian Lux, 303-921-6090)

  • Sled Hockey – Colorado Springs Sled Hockey Association (minimum age 7, info@cssha.org)

  • Rock Climbing - Rock Youth Program: Yellow Team (yellowteamclimbing@gmail.com, 719-634-9099)

  • Colorado Springs Therapeutic Recreation Program: provides opportunities for youth and adults with disabilities to acquire skills that enable them to participate in leisure experiences of their choice and enhance their abilities to function within a community setting. The TR staff provides advocacy and inclusion support for individuals with disabilities to enjoy general recreation activities, as well as specialized therapeutic programs that include opportunities in the following core areas:

    • Arts and Culture;

    • Sports, Fitness and Aquatics;

    • Social Enrichment;

    • Community Integration/Leisure Education;

    • and Outdoor Adventures.

  • Turning Pointe is a dance studio with a ballet class for kids with special needs every other week. Call for more details – 719 445 9497

Clinical Trial Update

Colorado Medicaid Waiver

Each state’s Human Services Department provides essential services to the state’s most vulnerable residents to ensure that seniors, people with disabilities, children and others meet their basic needs and have the opportunity to reach their full potential.

Community Inclusion

  • Hope Kids:
    HopeKids provides ongoing events, activities and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition. We surround these remarkable children and their families with the message that hope is a powerful medicine. 

  • Team IMPACT:
    Team IMPACT provides a safe, supportive and encouraging environment for a child and their family to connect with a college athletic team and local campus community. Team IMPACT can fill the void left when traditional support systems are lacking or have negative implications. 

  • Special Olympics:
    Special Olympics is an exciting network that will give you firsthand experience in the transformational power of sports. In Colorado, Special Olympics participation encompasses 21 official sports, Unified Sports, Athlete Leadership, Inclusive Health and Young Athletes (2-7 years old). Beyond that, there are opportunities to be involved with Special Olympics Colorado at every age!

  • Friends of Man:

    Works through Referring Professionals (caseworkers, case managers, healthcare workers, social workers, school counselors, teachers, clergy) who apply for their patients and clients needing mobility equipment, prosthetics, glasses, dentures, hearing aids, and much more!

Family Advocates and Assistance

  • A Rise Above: the staff at ARA will assist you with obtaining Medicaid for your disabled child in a variety of ways, free of charge.

  • Parent to Parent Colorado: connecting families of children with disabilities or special healthcare needs to emotional and informational support.

  • Family Voices: Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities.  We connect a network of family organizations across the United States that provide support to families of CYSHCN.

Handicap Vans

Home Accessibility

Medical Equipment and Healthcare Supplies

  • Good Health Will: (formerly Rocky Mountain Medical Outfitting and Recycling) is a nonprofit organization that connects health care supplies and medical equipment to those in need. They provide low-cost purchase options for those items to the public. They have two stores, one in Loveland and one in Greeley, CO, but they can ship many of the smaller items nationwide.

Neighborhood Schools and Education

  • Peak Parent: PEAK Parent Center is a nonprofit that works every day to ensure that all people with disabilities are fully included in their neighborhood schools, communities, employment, and all walks of life.

Resources for Educators and Referring Professionals

Respite

  • Easterseals Respite & Rehab Center offers the following programs for adults with disabilities or other special needs. Click on the links below to find information on the programs this center offers.

  • Special Kids Special Families: Special Kids Special Families (SKSF) is a Colorado 501(c)3 nonprofit organization located in Colorado Springs founded in 1998 to provide respite and specialized care for children and adults with disabilities and special needs.

  • Colorado Respite Coalition: providing rest and resources for caregives

  • http://thefamilycaregiver.org – The nation’s leading family caregiver organization working to educate, support, empower and improve the quality of life of people who care for loved ones with a chronic illness or disability.

  • Megan’s Place: Megan’s place is a family-owned and operated center providing high-quality, stimulating care for the Denver Metro Area since 2014. It provides respite care for children ages 3-18 with developmental disabilities.

Vacations

  • Morgan’s Wonderland is located in San Antonio, TX

  • Make a Wish: For children diagnosed with critical illnesses, a wish come true can be a crucial turning point in their lives. A wish can be that spark that helps these children believe that anything is possible and gives them the strength to fight harder against their illnesses. This impact is why we are driven to make every one of these wishes come true. 

  • Book: 101 Accessible Vacations for Wheelers and Slow Walkers

  • Disney strives to provide a memorable experience for every child and has been consistently ranked as the most accommodating theme park in the U.S. for families of children with special needs.

    The special guide provides information on the types of accommodations and services Disney provides for each type of disability, such as:

    • Cognitive Disabilities

    • Visual Disabilities

    • Behavioral (ADD/ADHD)

    • Health (Diabetes)

    You can view Disney’s guide here.

Other

 Meet Brooke

 

Brooke is now 23 years old and lives in Peyton, CO.

Brooke likes swimming, horses, off-road riding, and inclusion with friends and family. She is the big sister to two younger sisters and she is the ruler of the household.

12.png