Find bereavement support for losing a loved one to Lafora disease.

First, we are so sorry for your loss. Our team has long included bereaved parents who continue to fight Lafora disease. Below is a list of resources we’ve compiled to help you navigate this journey.

Also, we would love to learn more about your loved one if you are comfortable sharing. Our team can also reach out to you individually to talk or share support. Contact us in whatever manner is easiest for you.

Bereavement Support Resources: 

  1. The Courageous Parents Network: The Courageous Parent Network offers resources to help navigate the process of understanding grief and building coping mechanisms. 
  1. Cope Foundation: COPE provides grief support programs for parents and families, including children, who have experienced loss.
  1. The Arc of Grief by PAME: The Arc of Grief is a presentation to help understand grief by Dr Sarah Friebert, MD, Director of Pediatric Palliative Care at Akron Children’s Hospital.
  1. The MISS Foundation: The MISS Foundation provides family support packets, opportunities to connect with a volunteer mentor, as well as referrals to counselors or other providers.
  1. The Dougy Center: Grief support resources and activities for children, teenagers, young adults, parents, and caregivers.
  1. Good Grief: Tips on navigating grief in various situations and having conversations about grief with children, in the workplace, and in other settings. They created a resource called What is grief? that you might find helpful.
  1. Identifying Abnormal Grief