Understanding DEI – Diversity

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In January 2023 I had the pleasure of joining the DSF team as the DEI Coordinator. The acronym ‘DEI’ may not be familiar to all, so let’s take a dive into each letter to understand what exactly DEI is.

DEI stands for Diversity, Equity, and Inclusion:

Diversity: the practice or quality of including or involving people from a range of different social and ethnic backgrounds and of different genders, sexual orientations, etc

For many of us in the workforce, we probably have never had a DEI coordinator within our administrative team, however I am sure that we are all familiar with having a Human Resource (HR) Representative. Your HR representative will assist management to ensure that everyone is treated equally and ensure the ‘equity’ amongst the departments, no matter the different social and ethnic backgrounds, different genders, sexual orientations, etc., of an employee.

The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families. DSF’s tagline is Community. Research. Progress. We are aware that the diagnosis has no preference or target audience, no rhyme or reason, many of our families having no history of epilepsy within their family history.

As the DEI coordinator, it is my goal to ensure that we are raising awareness and increasing awareness within all communities no matter the location, cultural differences, social or ethnic backgrounds, etc. DSF is based New Jersey, and we annually host events across the U.S. to try to provide an opportunity for our families and community partners to attend and participate. For many events we offer financial assistance to assist with financial burdens that may arise when caring with a special needs child. We also often record meetings and conferences to make them available to any family, worldwide. You also may notice that within our support groups we regularly ask for families and caregivers to share photos, videos or stories of your Dravet warrior. Our goal is to be able to show the diversity of our community. Our rare disease doesn’t care about the shade of your skin, the texture of your hair, not the color of your eyes; it can affect anyone. If you have not had the opportunity, I encourage you to consider sharing a photo and/or your warrior’s story so that as we continue to spread awareness, we can show the many beautiful faces that make up our community.

Additionally, we are aware that Spanish is presumed to be the second most commonly spoken language in the world. Therefore we are diligently working on expanding our printed, written, and virtual resources to Spanish. In June we also introduced our Spanish speaking Facebook support group called: Sindrome de Dravet: Grupo de Apoyo Para Padres y Cuidadores. Our goal is to create a space where we can nurture the language, beliefs, and cultural differences that may exist between the Hispanic and American communities. Culture often influences behaviors within a group of individuals, which can directly affect medical decisions. With Dravet syndrome being a rare disease, it may be difficult to find a provider that has experience treating your loved one. Therefore, with the changes we have put in place we are committed to be able to provide the Hispanic community the tools needed to identify medical options available, identify clinical research being conducted, and overall ensure that all caregivers are able to empower themselves with knowledge necessary to seek the best options for their Dravet Warrior.

Please stay tuned for our next blog post where we will discuss the next letter of the DEI acronym: E for equity.

Should you have any questions, suggestions or concerns, please feel free to contact me at: Tatiana@dravetfoundation.org

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