The Dysautonomia Project (TDP) is a non-profit, collaborative effort of volunteer healthcare providers, patients and community leaders working together to bridge the gap between what autonomic specialists know and what community-based providers and patients need to know. TDP provides a wide variety of help and information for patients and clinicians, including:

• Dysautonomia: what it is, common symptoms and types
• Patient resources
• Patient support and assistance center
• Patient and clinician webinars and courses
• Help finding a clinician

The Brenda Holzer Memorial Foundation is a nonprofit organization that works directly with families, school districts and other organizations to help children with disabilities. It supports children with disabilities by improving accessibility, advocating for understanding and lending a loving hand to those in need in Kendall County and the surrounding areas.

You can print the Brenda Holzer Memorial Foundation Application for Support or contact the foundation using the Contact Us form.

The Illinois Department of Human Services provides a list of resources for grandparents raising grandchildren.  The list of organizations providing help and information includes:

• Statewide programs offered through the Illinois Department on Aging
• Legal help
• Insurance information
• A podcast devoted to grandparents raising grandchildren
• Magazines and other publications

Misericordia is a not-for-profit corporation providing a community of support, employment and living options for people with mild to profound developmental and physical disabilities. It currently provides residential services for more than 600 children and adults on its 37-acre Chicago campus and in the community. Programs focus on helping residents live as independently as possible and explore their interests, including:

• Building life and employment skills
• Art classes and studio time
• Gardening and greenhouse management
• Recreational opportunities and more

Misericordia residential settings include:

• CILAs (Community Integrated Living Arrangements for small groups in neighborhood homes outside Misericordia’s main campus)
• On-campus apartments
• Group homes on campus
• A skilled nursing residence

For questions, please see Misericordia’s Contact Us page or call  (773) 973-6300.

Camp Riley in Martinsville, Ind., empowers children with physical and developmental disabilities through life-changing week-long camp experiences tailored to their individual needs. Campers with physical and developmental disabilities, Down syndrome, craniofacial anomalies, sickle cell anemia, and other blood disorders can have fun while shattering limitations, making new friends and increasing their independence.

Camp Riley takes place at Indiana University’s Outdoor Center, Bradford Woods, with the support of Riley Children’s Foundation.  Riley Hospital for Children at IU Health provides 24-hour medical coverage for Camp Riley, including medical and nursing directors, resident physicians, nurses and a pharmacy team.

Camp Riley hosts eight camps each summer:

• Camp Riley 1 – Campers 8 to18 years old with physical disabilities needing a 1-to-1 ratio
• Camp Riley 2 – Campers 8 to18 years old with physical disabilities needing a 1-to-2  ratio
• Camp Riley 3 – Campers 8 to18 years old with physical disabilities needing a 1-to-3 ratio
• Camp Riley+ – Adults 18 and over with a physical disability needing a 1-to-1 ratio
• Camp About Face – Campers 8 to18 years old with craniofacial anomalies
• Camp Hi-Lite – Campers 8 to 22 years old with Down syndrome needing a 1-to-2 ratio
• Camp Independence – Campers 8 to 18 years old with sickle cell anemia and other blood disorders needing a 1-to-5 ratio
• Camp Kan Du – Campers 8 to 18 years old with a cognitive level ranging from birth to 48 months and with physical disabilities needing a 2-to-1 ratio

Apply for Camp Riley online.

Camp Riley also includes a “Beyond the Woods” mentor program for teens ages 14-18 with a physical disability. Campers are matched with adult mentors who have been through similar life experiences and can act as a source of empowerment and a resource for campers on a variety of topics, including personal challenges, next steps in education and career, and more. For more information about the Beyond the Woods program, please call (765) 342-2915.

For more information, please contact therapy@iu.edu or call (765) 349-5122.

The Ear Community provides a list of charities, foundations and organizations that offer financial assistance to families with children who need help with surgery to reconstruct the outer ear (microtia) and open the ear canal (atresia) to improve hearing.

The More Than Project is a non-profit that supports special needs families through resources for caregivers, siblings and diagnoses. It aims to empower the entire family unit with understanding, community and compassion. It offers help and support that includes:

• Two larger-scale, in-person retreats a year where caregivers can relax and get a much-needed respite
• The More Than A Sibling program offering grants to siblings of children with disabilities
• The More Than A Teacher program providing sensory rooms to schools, creating more inclusive environments for students

For questions, contact the More Than Project online.

The Central Illinois Transition Planning Committee (Central Illinois TPC) serves Peoria, Tazewell, Mason and Woodford counties. It helps connect parents, teachers, students and community members with resources to support students with disabilities in transitioning from secondary education to adult life.

Central Illinois TPC’s website provides a wide variety of information, including transition-to-adulthood community resources and a checklist, upcoming events, post-secondary college and training options, transportation resources for people with disabilities, and more. For more information, use the Central Illinois TPC’s Contact Us form.

 

Riley Children’s Foundation’s Camp About Face provides children born with a cleft lip or another craniofacial anomaly the chance to be themselves, make new friendships and build lasting skills that lead to a lifetime of success. Trained counselors act as positive role models, mentoring approximately 35 campers ages 8 to 18 to each year.

Camp About Face also offers the Leadership Academy for campers ages 16 to 18 as a companion program to the traditional craniofacial camp. Participants arrive the weekend before Camp About Face begins and focus on leadership, self-reflection and other skills that will help them transition into adulthood.

Visit the Camp Riley website to learn more about camp dates and the application process.

For more information, call the Riley Children’s Hospital Cleft and Craniofacial Anomalies Department office at (317) 944-2489.

 

BIrth to Five Region 26 serves Fulton, Hancock, McDonough and Schuyler counties. Birth to Five is a network of local councils that listen to families to identify community needs, build sustainable services, and help families connect to the help they need. Region 26 resources and information include:

• Fulton, Hancock, McDonough and Schuyler County Mental and Behavioral Health Resources Guide
• NAMI’s West Central Illinois Behavioral Health Resource Guide
• The Region 26 newsletter
• The Royal Guide, a comprehensive list of resources for individuals and children who are on the spectrum