Health Condition and Disability-Specific Resources
Epilepsy Foundation of Greater Southern Illinois
The Epilepsy Foundation of Greater Southern Illinois aims to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures and save lives. Its programs include epilepsy and seizure support services, home-based services, residential services, epilepsy education programs, support groups, Camp Roehr, a scholarship and more.
Its website also provides resources, including a New to Epilepsy Guide, a seizure calendar, a Professionals and Caregiver Guide, and more.
For questions or more information, please visit the Contact Page for the Southern Illinois Region Office and the Epilepsy Foundation of Greater Southern Illinois for coverage information and phone numbers.
Epilepsy Foundation of Greater Southern Illinois’ Camp Roehr
The Epilepsy Foundation of Greater Southern Illinois (EFGSI) hosts an annual, overnight camp for children and teenagers with epilepsy. Camp Roehr provides campers ages 6 to 17 with seven days of fun, building friendships and learning about living with epilepsy. Camp registration typically begins in mid-April. Participant requirements include:
- Living in Illinois or surrounding states
- Having a primary diagnosis of epilepsy and well-controlled seizures
- Being able to care for their own basic needs and ready for an overnight camp experience
For questions about Camp Roehr, please contact EFGSI at (618) 236-2181 or info@epilepsygsil.org.
FACES: The National Craniofacial Association
FACES: The National Craniofacial Association is a voluntary, non-profit organization providing information, support and services, and financial assistance for medically necessary travel to children and adults throughout the United States with severe craniofacial anomalies resulting from birth defects, injuries or disease.
FACES financial assistance includes help with transportation costs, lodging, meals, toll fees, taxi/Uber fares, airfare, and, in some circumstances, rental cars. There are maximum limits per trip. Its application process looks at the whole picture, not just the numbers.
For any questions, please email Kim at kim@faces-cranio.org or call (800) 332-2373.
FacingDisability provides stories, hundreds of resources on paralysis, and up-to-date information on spinal cord injury. The organization works with medical experts from major hospitals, universities and rehabilitation institutions nationwide to provide insight and inspiration. FacingDisability resource topics include:
- Disability advocates
- Family and caregiver support
- Assistive technology
- Financial assistance and government programs
- Education and employment
If you have any questions, please contact FacingDisability at (312) 284-2525 or email info@facingdisability.com.
Fathering a Deaf or Hard-of-Hearing Child: An Onboarding Checklist for Dads
The Early Hearing Detection and Intervention (EHDI) Parent to Parent Committee developed a checklist written by fathers of children who are deaf or hard of hearing (D/HH) for dads or anyone who feels they fulfill this role in a child’s life.
“Fathering a Deaf or Hard-of-Hearing Child: An Onboarding Checklist for Dads” provides information and action steps to support and encourage fathers to take an active role in every aspect of their child’s life from the start. The guide shares information from a dad’s perspective on topics including:
- The ” new dad” learning curve
- Language and communication
- School and legal rights
- Well-being
Feeding Tube Information from Lurie Children’s Hospital
Ann and Robert H. Lurie Children’s Hospital of Chicago provides this video on “The Basics of Caring for a Child With Feeding Tubes.” Lurie also provides the parent guide, “Supporting Nutrition: Understanding Tube Feeding.” The reference guide includes personal stories and information on:
- Administering feedings through the feeding tube
- Changing the dressings and cleaning around the tube
- Problems that may occur with the gastrostomy tube or the insertion site
Lurie’s website also offers tube-feeding resources for children and adults with cystic fibrosis and an overview of the types of feeding tubes for children.
Please note this information is not a substitute for the medical care and advice of your physician. There may be individual circumstances in your child’s healthcare that cause a variation in treatment.
Finding Help for Young Children With Disabilities and Developmental Delays
Every child is unique, and some children face extra physical or learning challenges. Parents often have questions about sources of information and support. This Finding Help for Young Children With Disabilities and Developmental Delays resource list from the Illinois Early Learning Project shares information for parents on how to get your child evaluated, how to get special education services for your child and where to find more information to support children with autism, Down syndrome, hearing loss and vision loss.
flok for Individuals with an Inherited Metabolic Disorder
Formerly known as PKU News, flok provides resources, research, support and an app for individuals with an inherited metabolic disorder and the people and clinicians who care for them. These conditions include Classical Homocystinuria (HCU), Maple Syrup Urine Disease (MSUD), Phenylketonuria (PKU), Tyrosinemia and more.
The flok website includes:
- Opportunities to connect and share in person and virtually
- Annual flok Family Camps
- Food science information guided by a staff dietitian and collaborations with partner organizations and Genetic Metabolic Dietitians International
- The flok app for individuals managing an inherited disorder of protein metabolism
For questions, please contact flok at info@flok.org or (973) 619-9160.
Flying Horse Farms Camp for Families and Children with Serious Illnesses
Flying Horse Farms (FHF) is a free medical specialty camp for children and young adults ages 7 to 21 with complex medical conditions and their families. Located in Mt. Gilead, Ohio, FHF offers fun, transformative overnight and family camping experiences to campers across the United States. There is no cost to attend camp sessions. Lodging and meals are also provided.
Camps are available for children and young adults with diagnoses and conditions that include:
- Heart and lung conditions
- Rheumatologic diagnoses
- Craniofacial diagnoses
- Blood disorders
- Gastrointestinal disorders
- Spinal cord diagnoses
- Mental health conditions
See the Flying Horse Farms camp schedule.
For questions, please contact Flying Horse Farms at (419) 751-7077 or info@flyinghorsefarms.org.
Foundation for Hearing and Speech Resources
The Foundation for Hearing and Speech Resources (FHSR) is a private, non-profit, grassroots organization dedicated to improving the quality of life for all children affected by hearing and communication disorders.
Parent resources and programming include:
- Facts about Hearing Loss
- Ages and Stages
- Clinical and Community Outreach
- Music programming
- Music scholarships in the Chicagoland area