Champaign Resources
The HAP Foundation provides patient-centered hospice and palliative care education, research, workforce development and support. The foundation helps any family of a child or adult living with a serious illness understand palliative and hospice care options, and connect to and strengthen care throughout their journey. The HAP Foundation resources also include:
- Palliative and hospice care information for families and medical professionals
- Help for finding and accessing care
- Missing Pieces support group for anyone grieving the loss of a child
- The Pediatric Resource Guide for patients, families and practitioners
- Chicagoland resources and events
Perkins School for the Blind College Readiness Resource Center
Perkins School for the Blind College Readiness Resource Center helps students and the many people involved in assisting them prepare for success. Students, families and education professionals can access helpful planning and assessment tools, checklists and resources for going to college, pre-college training programs or heading straight to work.
The College Readiness Resource Center includes:
- Resources for families to start planning early
- Information on the laws that affect the transition from high school to college
- How to get students ready for life after high school
- The College Readiness Checklist and Teachers of Students with Visual Impairments (TVI) Toolkit
Generation Patient is a nonprofit organization created by and for young adult patients with chronic, complex, rare or undiagnosed medical conditions. The organization’s focus includes providing peer-support groups, roundtable discussions and helping to drive systems-level change through policy work, leadership programming and advocacy initiatives across healthcare and research spaces.
Generation Patient also offers:
- “Creating Spaces for Young Adults with Chronic Conditions,” a step-by-step toolkit with resources and strategies for finding and creating peer support
- Virtual community-led peer-support groups for young adults (ages 18 and up), including:
- A general group for young adults with chronic and rare medical conditions,
- A higher education group for patients in college or graduate school,
- A group for young adults with irritable bowel disease (IBD)
First Hand Foundation‘s pediatric medical grants provide vital financial assistance to uninsured or underinsured children up to 18 years old. The grants aim to help children receive timely, life-changing treatment that improves their health and quality of life. Families can apply for grants to cover critical medical expenses such as surgeries, prescriptions, medical equipment and travel costs. Each child is eligible for one grant every 12 months.
Learn more about applying for a grant, covered expenses and eligibility on First Hand Foundation’s website.
Applications can be submitted anytime. Grants are reviewed monthly.
The Child Mind Institute’s Family Resource Center provides information for parents, caregivers and others supporting children struggling with mental health, behavior or learning challenges. Resources include parenting guides, a glossary of terms and up-to-date information on learning and behavior disorders, sensory processing, milestones and more.
The Child Mind Institute offers a variety of free parenting guides in English and Spanish. Guide topics include:
Oracle Health Foundation’s pediatric grants cover various clinical, equipment, and travel and lodging costs related to children’s healthcare needs. The foundation accepts applications from the United States and through select international providers.
Funding criteria include that the applicant must be 21 or younger (special consideration given for individuals 22-25 receiving pediatric treatment). You can find more details on the Oracle Health Foundation website on how to request a pediatric grant.
FreeFood.org is a website where people can find and add free food resources locally and nationwide.
CommunicationFIRST advocates to ensure everyone has the support they need to express themselves effectively and be heard. Organization members include people of all ages with over two dozen known and unknown expressive communication-related conditions, congenital and developmental disabilities, and conditions acquired later in life. CommunicationFIRST resources include:
- “The Words We Use” style guide
- Tips for online meetings with augmentative and alternative communication (AAC) users, by AAC users
- The “See us. Hear us.” film series
- The AAC Counts Project
Camp Sunshine for Children with Life-Threatening Illnesses and Their Families in Maine
Camp Sunshine helps children with life-threatening illnesses and their families find hope, community and a safe space for recharging together. Located in Maine, the camp offers medical support and free, year-round camping sessions for children ages 21 and under, their siblings, parents and caregivers. Campers come from all over the United States, Canada, and other parts of the world. Bereavement sessions are also available for families who have experienced the death of a child from a supported illness.
Camp Sunshine offers sessions of varying lengths throughout the year. Supported conditions and diagnoses include:
- A brain tumor, cancer and retinoblastoma
- Kidney disease
- Sickle cell disease
- Hematologic conditions
- Phenylketonuria (PKU) and more
Homocystinuria (HCU) Network America
Homocystinuria (HCU) Network America provides free resources and connections for people impacted by this rare genetic disorder that affects the body’s ability to process the amino acid homocysteine. HCU Network America supports a wide range of research and provides educational resources, connections and practical tools to help patients and their families navigate living with HCU.
HCU Network America resources include:
- Information on understanding HCU, clinic visits and treatment options
- An HCU Community Cookbook
- A downloadable Classical HCU Toolkit and podcast
- A New Patient Toolkit