Family and Caregiving Support Resources
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.
Flu: A Guide for Parents of Children or Adolescents with Chronic Health Conditions
Children younger than 5, but especially children younger than 2 years old, and children and adolescents with chronic health conditions are at greater risk for serious flu complications. HealthyChildren.org provides information on how to determine your chid’s risk and what steps to take to protect your family.
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.
Food Allergy Research & Education (FARE)
Food Allergy Research & Education (FARE) provides research, resources and advocacy to improve the quality of life and health of people of all ages with food allergy. Food allergy can cause life-threatening allergic reactions. FARE supports food allergy research, education programs for people with and without food allergies, and awareness of healthcare options and treatments.
FARE programs and services also include:
- “Teen Talk,” a monthly virtual hangout for preteens, teens, and young adults with food allergies
- Allergy alerts and ingredient notices
- A Food Allergy Guide, toolkits and other downloadable resources in English and Spanish
- Resources for dieticians and other healthcare professionals
- Recipes
- Support groups
If you have any questions, please contact 1 (800) 929-4040 or complete the Contact Us form on FARE’s website.
Food and Support Programs in Chicago and Cook County
Get help finding food, nutrition programs, job training, and accessing programs at over 700 food pantries, soup kitchens, shelters, and other community partners in the Chicagoland area.
Visit the Greater Chicago Food Depository website for more information.
Food Pantries in the Rock Island Area
Catholic Quad Cities offers food pantries and outreach throughout the area. Visit its Works of Mercy page for a list of pantries, services and when each location is open.
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
The Free Formula Exchange is a nationwide mutual aid network connecting families who need baby formula to people who have formula to donate. This online tool is free to use.
Friends of Man is a non-profit that uses 100% of donations for charitable assistance. The charity receives applications requesting mobility equipment, prosthetics, home modifications, medical equipment, hearing aids, basic needs and much more from referring professionals. Referring professionals include caseworkers, case managers, healthcare workers, social workers, school counselors, teachers and clergy who apply on behalf of their patients and clients.
In addition to the assistance listed above, Friends of Man can provide assistance nationwide for adaptive equipment, assistive technology, lift chairs, mobility equipment, orthopedic braces and shoes, stairlifts, vehicle adaptations and wheelchair ramps.
More details are on the Friends of Man Eligibility page.
Gender Development Program at Ann & Robert H. Lurie Children’s Hospital of Chicago
Gender development services at Lurie Children’s are outpatient services aimed at supporting the physical, mental and social health of patients and their families as youth progress through gender identity development. The goal is to keep families informed of their treatment options and support them with medical and behavioral health care along the way.