June 7, 2023
Logo with updated tagline

Dear Friends,

It's finally our favorite month of the year - Dravet Syndrome Awareness Month! This month is extra special to us because it's a great opportunity to educate others and bring attention to the needs within our community.

We encourage you to join us as we spread the word about Dravet syndrome and the families it impacts. Looking for ways to get started? Hosting a fundraiser or making a donation are both great ways to help us raise funds for a cure.

Learn more about how to get involved this month here (or keep reading below!)

Thank you,

Dravet Syndrome Foundation

 

Being Person-Centered: A Workshop for Dravet Families

Up next in our 2023 DSF Caregiver Educational webinar series is Being Person-Centered: a Workshop for Dravet Families, presented by Cheryl Ryan Chan. During this 75-minute workshop, we will discuss what it means to be person-centered, how to shift our thinking, re-frame our perspectives, and apply strategies that truly support those we love. We encourage you to join us for this discussion on Wednesday, June 14 at 4 p.m. PT | 5 p.m. MT | 6 p.m. CT | 7 p.m. ET.

Learn more and register for the webinar today here.

 

Remembrance Day

Each year, June 15 is recognized as Dravet Remembrance Day. This is a time to remember all of those who we have lost to this disease.

Bereaved families are invited to share the names of loved ones who have passed away as a result of Dravet syndrome, for inclusion on our Remembrance Wall. Join our public Facebook page on June 15th at noon ET for a tribute to all those individuals we have lost. 

 

Dye it for Dravet

Dye it for Dravet is back and you're invited to join us as we show our DSF support in an extreme way! Participants are encouraged to dye their hair, beard, or moustache purple to help us fundraise with color. 

After you register you will be given your own fundraising page to tell your story, upload pictures and ask your friends & family for support. Are you ready to go purple for us?! Learn more and register today here.

Heart to Heart

Our next Heart to Heart session is just around the corner! Our community will meet virtually on Monday, June 26, to connect and have thoughtful discussions together.

You can attend the daytime and/or evening session, just be sure to register to save your spot. Participants must be registered with our DSF Family Network. Register for the daytime session here. Register for the evening session here.

 
 

News and Events

  • Research Grant Applications - We are now accepting research grant applications for 2023, including a special one-time call for applications focused on genetic impacts on patient phenotype with budgets up to $1M. Learn more about the qualifications and opportunities here.
  • Caregiver Connect - Caregiver Connect is a program designed to help families deal with the many emotions of being a caregiver to a child with a rare disease. Learn more about how this tool can help you here.
  • Clinical Trials - Learn about upcoming clinical trials and see if any may be right for you and your family.
 
DSF moderates private support groups for parents and caregivers of loved ones with Dravet syndrome.
These are great resources for families to ask questions and find support. 
Learn more

DSF is proud to be a GuideStar Platinum Nonprofit Profile participant.
Platinum lets us show quantitative metrics on the progress we’re making toward our mission!
Learn more

 

Dravet Syndrome Foundation
PO Box 3026  | Cherry Hill, New Jersey 08034
203-392-1955 | info@dravetfoundation.org

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