Resource Directory /

St. Clair Resources

  • Sickle Cell Disease Association of Illinois

    The Sickle Cell Disease Association of Illinois provides resources, education and support for individuals with sickle cell disease (SCD) and their caregivers. Its website includes information about:

    • Current SCD treatment options
    • Virtual monthly support groups on Zoom
    • GroupMe app support groups (the app is for use on cell phones or computers)
    • SCD testing and newborn screening
    • Scholarships and camp opportunities
    • Events

  • The Kids Equipment Network

    The Kids Equipment Network (TKEN) is a non-profit organization connecting children with disabilities with new and gently-used durable, adaptive equipment at no cost. Illinois families with children from birth to 21 can fill out an application to request equipment. TKEN then seeks equipment matching the child’s needs. The family is invited to a fitting clinic when the equipment becomes available.

    Volunteers provide free monthly clinics for custom-fitting equipment in Chicago and the suburbs. Families can request items including:

    • Strollers
    • Wheelchairs
    • Bath and toilet systems
    • Crutches
    • Canes and more

  • Ariana Rye Foundation

    The Ariana Rye Foundation helps children up to age 18 with developmental disabilities and complex medical medical needs get equipment to foster their social, mental and physical development. Families in need, from anywhere in the United States, can apply for help. Requests for equipment can include feeding or bath chairs, car seats, adaptive strollers, mats, wedges, specialty swings, sensory equipment and more.

    The application, requirements for applying, and the annual application deadline are posted on its website.

    Families can apply once per year. The one-time equipment grant provides up to $1000 per child.

  • Brave Health Online Mental Health Services

    Brave Health provides online mental health services and accepts more than 200 insurance plans, including Medicaid and Medicare. Physicians, nurse practitioners, therapists and counselors with specialized training in mental health care provide care virtually in English and Spanish. Services include one-on-one and group therapy sessions, medication management, specialized programs and help managing complex medical and behavioral health challenges for adults and youth ages 13 and up.

    Brave Health has a closed-loop referral process and also accepts patients who do not have insurance. Patients, referrers and providers can visit Brave Health’s website for information on how to get started and other resources.

  • United Leukodystrophy Foundation

    The United Leukodystrophy Foundation (ULF) is a nonprofit providing leukodystrophy patients and their families with support and resources. ULF can help families with finding medical care, genetic counseling, networking and financial assistance. It also provides funding for medical research each year.

    ULF is based in Dekalb, Ill. Its Services and supports also include:

  • Autism Speaks Transition to Adulthood Resources

    Autism Speaks offers autistic teens and their families inspiration, information, toolkits and support for creating a roadmap for their transition to adulthood journey. Its transition planning tools for individuals and their families include:

  • KEEN (Kids Enjoy Exercise Now) St. Louis

    KEEN (Kids Enjoy Exercise Now) St. Louis offers youth with disabilities and volunteer coaches free, non-competitive, one-on-one programs providing physical activity, fun and support for the overall health and well-being of all participants. Programs are open to all youth ages 5 to 21 with physical or developmental disabilities. Indoor and outdoor recreational activities are available year-round. Registration for programs takes place quarterly.

    KEEN St. Louis programs are age appropriate and tailored to each athlete’s needs. Athletes can choose from a wide variety of camps, programs and day trips, including sports, yoga, swimming, dance and more. Fill out the New Athletes Enrollment Form online to learn more about becoming a KEEN St. Louis athlete.

  • Charting the LifeCourse Nexus Training and Technical Resource Center

    Charting the LifeCourse Nexus or LifeCourse Nexus framework was developed by families to help individuals with disabilities at any age or stage of life and their families develop a vision for a good life. LifeCourse Nexus provides free infographics, YouTube videos and step-by-step tip sheets to help people of all ages and abilities with identifying their dreams and desires, thinking about what they need to know and do, identifying how to find or develop supports, and discovering what it takes to live the lives they want to live.

    The LifeCourse Nexus Library features a wide range of downloadable materials to help with the transition from school to community, including:

    • Person-centered tools for exploring your desires and unique needs
    • The family perspective booklet and tip sheets
    • Kits (The Life Domains) focusing on life stages and exploring employment, healthy living, housing options and other areas
    • Videos and step-by-step tip sheets on using the Integrated Supports Star tools to bring everything together

  • Without Limits – Team Galaxy in St. Clair County

    Without Limits – Team Galaxy provides an inclusive environment where individuals with intellectual and developmental disabilities and their families can enjoy a wide range of recreational activities and free, monthly social events at the Swansea Moose Lodge 1221. The organization provides outreach and advocacy to ensure that people with disabilities can live, work, learn and play in communities in and around St. Clair County. Membership is $50 a year. Financial assistance is available.

    Participants can build skills and enjoy activities that include:

    • Drama and theater activities
    • Cheer team
    • Dance classes and company ($5 per class)
    • Special Olympics
    • Special sports clinics
    • Summer camps and more