May dates set for our first virtual family conference

2021 Family Conference logo

The NBIA Disorders Association is firming up details for its first-ever virtual international family conference. The online gathering, “Together Near and Far,” will be held May 20 to 23, 2021, so be sure and save the date.

Like other conferences held every other year over the past two decades, our 11th conference will include NBIA individuals, families, caregivers, researchers, clinicians and biotech leaders from around the world. Despite having to forego in-person interactions because of the COVID-19 pandemic, we will continue to build connections within our larger NBIA family — connections that make us stronger, more knowledgeable and empowered in our efforts to cultivate effective NBIA therapeutics and cures.

We are excited to announce the following speakers, with more to come:

  • Drs. Penny Hogarth and Susan Hayflick of the Oregon Health & Science University will speak on the pace of NBIA research.
  • Megan Elam, who has a doctorate in education and works at Cincinnati Children's Hospital will speak on ways to advocate for your child at school.
  • Mary Anne Ehlert, a certified financial planner who is founder and CEO of Ehlert Financial Group, will discuss how to create a future care plan for your child.
  • Tina Cadavid, a Licensed Independent Social Worker with Alliance Therapeutic Practices LLC, will lead the NBIA adult therapy session.

In addition to learning from our speakers, we will be offering many opportunities for NBIA individuals and families to engage and share information with each other. Those programs include:

  • Individual and family breakout networking sessions
  • Virtual dance party hosted by our very own DJ Mike
  • Daily meditation and yoga for all ability levels

Because the conference is being held virtually, we hope more NBIA individuals and families than ever before will be able to take part from the comfort and convenience of their homes. We hope we “see you” in the spring.



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