Help DSF raise awareness, as well as research funding, during Dravet Awareness Month.

Many hurdles exist in the Dravet syndrome (DS) community – including an understanding of the syndrome as well as the funds needed to research and find better treatment options. When you have a rare disease the largest setback for progress can be the numbers. When a disease is less common it complicates where the funding is coming from for research, patient assistance, and organizational operations to execute the programs that are desperately needed by the patient community.

More common diseases such as breast cancer or Alzheimer’s have a larger patient base, making it easier for them to raise more funds, more quickly. This is why it is so important for the DS community to band together and focus their efforts in a unified manner. Each of us has a responsibility to raise awareness of DS, not only for our loved one but for all of those in our patient community. By raising awareness, we are doing three critical things – assuring much needed connections are made between our patient families; raising funds to drive research and new treatments; and assuring a better understanding of DS by medical professionals that will improve diagnosis, treatment, care and quality of life for those impacted.

June is Dravet Syndrome Awareness month and June 23rd is International Dravet Syndrome Awareness Day. I encourage you each to start thinking ahead about some of the ways you can help DSF’s efforts this June to spread the word about Dravet syndrome and the needs of our community.

    Our annual Dravet Awareness t-shirt campaign is back for 2019. Choose your favorite shirt from a variety of styles and colors while supporting DSF and spreading awareness. This year’s campaign closes on Friday, May 17th to assure delivery by early June, so order now.
    It is frustrating when what you are doing isn’t having an immediate effect on your child. Personally, I found solace and hope in working to raise awareness as well as funds for research, even though I had never done any fundraising prior to my son’s diagnosis. By starting with the people who knew and loved him I realized that asking someone to donate is allowing them to be a part of something bigger than themselves and gives them the ability to help someone they care about. I am sure you have had this similar feeling when you have donated to other causes – we give because we want to help and it feels good to help. Facebook fundraisers have made it easy to raise funds and awareness. In 2018, almost $100,000 was raised by our community members through Facebook Fundraising Pages. Consider starting your own page in June and tell your loved ones story to raise awareness as well as funds. Contact Misty with any questions on how to start.
    Throughout the month of June, DSF will be sharing posts about DS on all of our social media channels. I encourage you to share these posts or consider telling your own story about living with DS. {Wendy’s Campaign} One of DSF’s initiatives for Awareness Month is a video called, Not Today Dravet! It will feature our warriors and the amazing things they have done in spite of the hardships that DS presents. If your loved one to be included, you can submit photos and a video clip at this link or email Wendy.