As mentioned in last week’s blog post we are very excited for this year’s Day of Dravet workshops which will consist of 5 sessions focused on topics important to caregivers. There will be a session held each Saturday of October, running from 12-3pm ET. We are excited to be pulling in many experts from our patient community to lead these sessions. Learn more about what each week has to offer below.

On October 2nd, 9th and 16th, join us for a three-part Brain First Parenting Training Workshop led by Eileen Devine, LCSW. DSF’s newest staff member, Erin Reoyo, shared her personal experience in participating in this workshop in last week’s blog post, and how it has adjusted her parenting approach.

Our sessions on October 23rd focus on relevant topics for caregivers of adult patients.  

  • Clinical Trials and Adult Patients – DSF Scientific Director, Dr. Veronica Hood, will offer an overview of clinical trials done in adults, what is ongoing, and what the hope for the future is.
  • Estate Planning – Jeff Goering, CFP®, RICP®, CEPA®, ChSNC®, is a financial advisor based in Virginia, and the uncle of a patient with Dravet syndrome. He will share an overview of estate planning and the things parents should consider when it comes to decisions affecting their loved one with Dravet syndrome.
  • Daily Life after Transition – This 90 minute session will be led by three parents of adults with Dravet syndrome – Kathy Dodd, Diane-Martin Rudnick, and Barbara Swoyer. They will discuss condsiderations and what the daily life of an adult might look like after transition. They will share their personal experiences on topics ranging from living situation options; day programs and recreational activities; identifying needed resources and support; and more.

Our sessions on October 30th highlight topics that are relevant to parents of younger children.

  • Early Intervention and Waiver Programs – Sirena Denbow, whose daughter has Dravet syndrome, has been working in the field of Social Security for over 20 years. She will be joined by Jeanette Lafoon, Esq, of Maddox & Laffoon Law Firm to offer an overview of how to find out what waiver programs are available in your state, as well as what to expect from Early Intervention programs.
  • Ketogenic Diet – Robyn Blackford, RD, LDN, has worked as the expert ketogenic dietitian at Lurie Children’s in Chicago since 2005. She has helped initiate and grow the formal Ketogenic Diet Program that follows over 350 patients, making it one of the largest Keto Centers in North America. She will join us to discuss the use of the ketogenic diet in patients with Dravet syndrome. 
  • Seizure Assistance Dogs – Hear from parents Bethany Goering, Erin Reoyo, and Morgan Turpin as they share their personal experiences with obtaining a seizure assistance dog. They will discuss selecting an organization, deciding on what assistance the dog will provide, fundraising, training, life after, and more.
  • Seizure Monitoring Devices – DSF Scientific Director, Dr. Veronica Hood, will offer an overview of currently available devices, followed by a Q&A with a parent panel on their personal experience with devices.  

Register today and join us for any and all of the sessions which are valuable to you! Participants will receive a registration packet mailed to them in early October with items from DSF and our sponsors, and will have access to all sessions on demand through November 30, 2021. In addition, siblings are invited to participate in a fun 90-minute sib session each week, led by Ms Laurie. Special thanks to our sponsors whose support offset the cost of these workshops.

Thank You to Our Sponsors!