NEW FOR 2021!

Volunteer to be a certified peer support specialist

We’ve partnered with Parent2Parent USA to train our peer support specialists with research-based best practices. Your lived experience will help other parents navigate their child’s epilepsy surgery journey by providing important emotional and informational support. We’re building this program in early 2021 and will contact you with training information once the program is launched. Sign up below if you’re interested and want further information. We seek a diverse community of peer supporters from a wide range of socio-economic and cultural backgrounds including bilingual participants.

I’m Interested

Parent to Parent USA member committed to Parent to Parent USA endorsed practices

Connect.

There are several ways we help you connect with other parents who have navigated this journey before you. 

Email

Email our team at info@brainrecoveryproject.org and we’ll match you with a family whose child has a similar cause of seizures and developmental profile.

Social Media and Websites

There are several websites and social media groups created by parents, for parents, you may find helpful.

  • Pediatric Epilepsy Surgery Support – a private Facebook group for parents of children considering or who have had brain surgery to stop seizures.
  • Hemispherectomy Foundation – Provides emotional support, camp and other assistance grants to families impacted by hemispherectomy. Includes a public Facebook group administered by the organization.  A Spanish-speaking page is available here.
  • Hemispherectomy France – a public Facebook group for French-speaking parents of children considering or who have had hemispherectomy administered by a parent.
  • Hemimegalencephaly Family Support Network: A network of families created by a parent to inform and support parents of children diagnosed with hemimegalencephaly. Includes website and closed, moderated Facebook group.
  • Infantile Spasms Community:  A network of families created by parents to inform and support parents of children diagnosed with infantile spasms. Includes website and Facebook group.
  • Lennox-Gastaut Syndrome Foundation: A non-profit organization dedicated to providing information about Lennox-Gastaut Syndrome while raising funds for research, services and support for individuals living with LGS and their families.
  • Tuberous Sclerosis Alliance: A nonprofit organization for children and adults diagnosed with tuberous sclerosis, many of whom need epilepsy surgery. Their website includes information about their online communities for peer support.