Foundations partner to provide Dravet bereavement support
Good Mourning Project offers families resources, remembrance items
The Dravet Syndrome Foundation (DSF) is partnering with the Mason’s Movement Foundation to provide bereavement support to families who have lost someone to Dravet syndrome.
The partnership connects bereaved families to a Mason’s Movement initiative called the Good Mourning Project, which provides resources, support, and remembrance items to parents and siblings. The goal is to ensure grieving Dravet families in the U.S. have access to resources that may help them through a difficult time.
“We deeply appreciate the Mason’s Movement Foundation for offering this invaluable support to our families who have lost a loved one,” Mary Anne Meskis, executive director of DSF, said in a foundation press release. “Their support offers significant comfort during a time when families are struggling to find their footing.”
Dravet syndrome is a severe type of epilepsy characterized by frequent and prolonged seizures, or uncontrolled bursts of electrical activity in the brain, that usually start in early infancy and are resistant to existing epilepsy medications.
Dravet comes with risks
Due to the high frequency of seizures, patients often develop cognitive and physical issues, including poor growth, movement problems, or language and sensory processing difficulties. Dravet patients are also at a higher risk for sudden, unexpected death in epilepsy, also known as SUDEP, which may occur in up to 1% of patients each year.
Dravet patients face a 15%-20% mortality rate due to SUDEP, prolonged seizures, seizure-related accidents, and infections, DSF said.
“As Mason’s parents, we know the sacred dance between pain and peace. Gratefulness and despair,” said Mason’s Movement founders Amanda and Matt Langford. “Our vision for Mason’s Movement is to hold space for those who have lost a child or sibling, and offer light in a time of darkness.”
The Langfords’ son Mason died from SUDEP before he turned 2.
“When we lost Mason, we made it through with the support of family, friends, and complete strangers who understood the depths of our loss,” they said. “We are grateful for the opportunity to help others, the same way we were once guided in our grief journey.”
DSF is dedicated to raising funds, advancing research, increasing disease awareness, and supporting individuals and families affected by Dravet syndrome and related epilepsies.
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