I have attended two Dravet syndrome educational conferences – the first one was in 2010 in Connecticut, and the second one was DSF’s Family and Professional Conference in 2022 in Fort Worth, Texas. I learned so much at both conferences and made so many Dravet friends at both. As a parent of an adult with Dravet, here are ten reasons I go to these conferences.
- Meet other Dravet families on this journey
- Find out about new drugs & therapies on the horizon-talk with drug reps and researchers. Let them know your concerns and opinions. They want to hear from you.
- Understand Dravet syndrome better
- Learn and understand about the research funded by the DSF-see where the DSF funds go. For years I read about research involving “zebrafish.” I wondered, “What are zebrafish? What do they have to do with Dravet syndrome?” I got answers to these questions and more.
- Fellowship!!! Talking with other families and making new friends who just “get it” was so rewarding and uplifting.
- Opportunity to meet and talk with the DSF leadership in person. Put a face with a name, and they get to meet you, too. Introduce yourself!
- Share your story honestly and openly with others who care and understand.
- Make new friends-super important!
- Get away from home and have a break (with or without your Dravet warrior–if you bring your Dravet warrior, someone needs to be with him or her while you attend the sessions). Hotel is awesome and the food is super delicious!!
- Meet other families from your area of the country or world. Meet your area’s Family Network Ambassadors (FNA) and offer to help plan a fundraiser, participate in a “Steps for a Cure” fundraiser, or just plan/attend a local Dravet family get-together.
There are so many other reasons to attend a DSF Family & Professional Conference. These are just 10 of my reasons for attending. I hope you will truly consider attending the conference in June 2024. I’m excited to visit a new state, and hopefully connect with an old friend, as well as making new ones. Hope to see you there!!
