Educational Events on Tap to Mark Dravet Awareness Month and Day

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by Mary Chapman |

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From remembering those lost to Dravet syndrome to sharing patient stories, supporters are gearing up to mark Dravet Syndrome Awareness Month, observed each June to call attention to this severe type of epilepsy and the 1 in 20,000 to 40,000 individuals globally it is thought to affect.

International Dravet Syndrome Awareness Day is June 23.

Awareness and education are necessary to increase the recognition, diagnosis, knowledge, and management of Dravet syndrome, patients, caregivers, and supporters say. Dravet is a genetic condition characterized by episodes of prolonged seizures that start in the first year of patients’ lives. In fact, the theme for this year’s June event is Raising Public Awareness.

“By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure that patient families have the information they need to manage their loved one’s care; and reduce the feelings of isolation faced by patients and their families,” states the Dravet Syndrome Foundation (DSF) on an Awareness Month webpage.

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The organization is offering several ways to participate, including the debut of “The Balancing Act Presents Behind the Mystery of Dravet Syndrome” on June 13 at 7:30 a.m. ET/PT on Lifetime TV. The Balancing Act’s recurring Behind the Mystery segment aims to explore a variety of aspects of rare and genetic disorders in a way that is easy to understand.

The DSF partnered with The Balancing Act for this 30-minute special Dravet edition that will be broadcast again on June 21 during the same time slot. The segment is presented by TV host, motivational speaker, and multiple sclerosis patient Montel Williams, along with The Balancing Act host Olga Villaverde. Following these two dates, it will be available to stream online.

The segment follows the medical journey of the Raia family and daughter Kaylee. A Dravet syndrome overview is provided by Kaylee’s neurologist, Linda Laux, MD, an attending physician in the neurology and epilepsy center of the Ann & Robert H. Lurie Children’s Hospital, and the DSF medical advisory board chair. It will feature a discussion about the importance of industry–patient organization partnerships in making certain that new treatments meet the needs of rare disease patients.

There also will be a screening of the segment on June 23, marking the International Dravet Syndrome Awareness Day. That will be held at the 2022 DSF Biennial Family & Professional Conference, running June 23–25 in Fort Worth, Texas.

On June 15, the DSF will reprise its annual Remembrance Day, set aside to memorialize those who lost their lives to Dravet. Family members can submit their loved ones’ names for inclusion on the organization’s virtual Remembrance Wall. “This virtual wall provides a place and a way for families, along with our community, to remember and honor their loved ones forever,” the organization notes.

Awareness Month participants, who are asked to use the hashtag #curedravet, also are encouraged to establish a personal fundraiser page to support DSF research and programming. The fundraising goal is $10,000.

Also, patients, families and caregivers are invited to share their experiences on social media to help raise Dravet awareness. The DSF is offering techniques to help make such storytelling more effective.

In the United Kingdom, Dravet Syndrome UK is marking Awareness Month by sharing facts and stories and offering a variety of ways to participate. These include adding the organization’s photo frame to social media profile pictures and setting up a Facebook fundraiser to heighten disease awareness and support Dravet Syndrome UK efforts. The organization’s theme again this year is Every Family Counts.

Dravet Syndrome UK, which also is observing Dravet Syndrome Remembrance Day on June 15, is offering its own Wall of Remembrance. UK participants may submit names to [email protected]