Family Network and Brand Ambassador Program

One of the facets of DSF is the Family Network (FNA) and Brand Ambassador programs. Both programs are made up of caregivers of Dravet syndrome patients. These volunteers act as signposts to help guide others to our organization who are looking for support, education, and awareness. They help facilitate communication within our community, between our community and DSF, and help to further the mission of our foundation. They do this by engaging in social media, our online support groups, fundraising, and attending live and virtual events. Family Network Ambassadors are selected from each of the five regions: West, Mountain, Midwest, Northeast, and Southeast. We are looking forward to growing both programs in the coming year with the intention to have two to three FNA per region and a cohort of five brand ambassadors.

Family Network Ambassadors (FNA) are integral to the growth and development of our family support programs. In this role you are often the first fellow Dravet parent a newly diagnosed family speaks to, and that first connection can be monumental in the journey with Dravet syndrome. As such, it is expected that this position is filled by a parent or guardian of a patient with Dravet. This opportunity is a two year commitment.

Brand Ambassadors are people who excel in the sharing of information across multiple social media platforms. In this role, you are often the first exposure to the Dravet syndrome community and to Dravet Syndrome Foundation. Someone may search a hashtag and find your post and, because of that, be led to the support they need. This opportunity is a one year commitment.

The DSF Family Network is a program for parents and families in the U.S. aimed at providing more localized support and resources for families across five regions. Our resources include online regional support groups, in person gatherings such as our Day of Dravet workshops, fundraisers, and Caregiver Connect gatherings. All of this is made possible with support from our team of volunteer Family Network Ambassadors. This is a volunteer position and is not compensated. If travel is required as an FNA, expenses may be subject to reimbursement for out of state events and are subject to the approval of the Family Network Coordinator. It is not expected that a Brand Ambassador will be required to travel, at this time.

To become a DSF Family Network or Brand Ambassador you must:

  • Be a parent or primary caregiver (guardian) for a child with Dravet syndrome or SCN1A related epilepsy
  • Be registered in our Family Network-if you are not currently registered for the Family Network you can do so here.
  • Complete application process that includes the application, social media posts, a short biography, and a virtual interview
  • Commit to a two-year volunteer term for FNA and a one-year term for Brand Ambassadors

Family Networks Ambassadors are expected to:

  • Attend and assist with the planning and execution of the Day of Dravet events in your region
  • Help to moderate and respond to questions in Facebook regional support groups
  • Support parents and caregivers in your region by helping to connect them with other families and appropriate resources
  • Participate in quarterly one-hour conference calls to discuss the progress of the program, upcoming events, and trainings specific to the position
  • Serve on a planning committee and/or volunteer for the biennial DSF Family & Professional Conference
  • Participate in and/or organize two or more fundraising events per year (May include virtual foundation events, e.g: Give Up Your Cup or Dye it For Dravet or a local event)
  • Complete other duties to further the mission of Dravet Syndrome Foundation

Brand Ambassadors are expected to:

  • Be competent and confident in the operation and use of social media platforms
  • Have a presence on multiple social media outlets
  • Interact with the current social media outlets operated by DSF
  • Share/re-post content created by DSF
  • Create content related to your life in the Dravet community
  • Report to the Family Network Coordinator by way of a monthly check in

Additional opportunities to get involved may include:

  • Participation in the creation, maintenance, and/or execution of additional resources to support families in your region such as virtual support groups, regional calendars, family gatherings, and DSF sponsored events
  • Supporting fundraising events in your region
  • Connecting with like-minded organizations in your region to streamline resources for families and promote awareness of Dravet syndrome and the advocacy programs of DSF
  • Trainings and continuing education
  • Organizing, planning, and executing Caregiver Connect Events

DSF is looking to grow our Family Network and Brand Ambassador Programs! If you are looking to give back to our community, we encourage YOU to apply!

The application is open to ALL parents and primary caregivers who legally make the medical decision for the Dravet patient.

We do have a special interest in applicants for these specific subsets of the community:

  • Fathers and male caregivers of patients with Dravet
    Parents and caregivers of adults with Dravet
  • Bilingual parents and caregivers
  • Parents and caregivers in the Mountain Region

Questions? Contact our DSF Family Network Coordinator. austin@dravetfoundation.org

Applications for 2024 Brand Ambassadors and 2024-2025 Family Network Ambassadors open on November 6, 2023 and close December, 2023, with interviews taking place Friday, 12/8 through Monday, 12/11. Decisions will be finalized and announced on or around 12/18/23.

DSF Family Network and Brand Ambassador Application

DSF does not accept any volunteer that has been convicted of a violent crime, or one that involves children or is sexual in nature, or involves fraud or significant theft. In addition, volunteers or any volunteer applicants charged with DUI within the last 10 years are expected to disclose this information to the Volunteer Manager. Such volunteers may be prohibited from serving as a volunteer for DSF. If occurrence happens during the volunteer’s tenure he or she may be asked to take a leave of absence. DSF reserves the right to dismiss any volunteer whose actions do not reflect the foundation’s needs, mission or values.

The information collected by Dravet Syndrome Foundation will not be sold or distributed outside of DSF and is used solely to verify identity and assist with communication. Questions or concerns can be directed to our team

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