Resources

Advocacy

• Every Life Foundation
  
• Little Lobbyists
  
• Family Voices

Siblings

• Deep Connections
  
• VIP Sibling

Parents & Caregivers

• Angel Aid
  
• Courageous Parents Network
  
• Rare Mamas
• A Mother’s Rest
• BBSOAS Virtual Parent Support & Resource Group
• BBSOAS Parents Only Facebook Group
• Caregiver Connect Modules

Transition to Adulthood

• Transition to Adulthood Checklist from Rare Epilepsy Network
  
• Education Transition for Children with Neurological Conditions is a free, self-paced online class about transitioning to adulthood from the Pediatric Epilepsy Surgery Alliance
• Aging and Disabilities Resources
  
• Got Transition is a resource program from The National Alliance to Advance Adolescent Health
• Simons Guardianship Resources

Special Needs Trusts & ABLE Act

• Able National Resource Center
  
• Able Act
  
• 2021 SNT ABLE Comparison Download
  
• USA Directory of Pooled Trusts

Families

• State-by-State Insurance Guide (USA) from Angelman Syndrome Foundation
• Child Neurology Foundation – Respite Care Notebook
  
• DEE-P – developmental epileptic encephalopathy resources for families
• Epilepsy Foundation – Telehealth Checklist:
  • English telemedicine: https://www.epilepsy.com/atom/36086
  • Spanish telemedicine: https://www.epilepsy.com/atom/36091
• A Mother’s Rest Foundation (AMR) – respite retreats including discounts for families with “extra needs”
• Handicap Accessible Vehicles
  
• Miracle Flights
  
• Angel Flight NE
• Variety – The Children’s Charity – medical equipment and mobility