Newly diagnosed families will join together to hear disease overviews and share their experiences and strategies for coping. Families who have received new diagnoses since the previous conference or who are new and have been unable to attend previous conferences are welcome to attend newly diagnosed sessions.

Our members have shared that research, management of symptoms, and new treatments are most important, along with information to support individuals with neurocognitive involvement and those without. Speakers will focus on these topics. Syndrome-specific and relationship-specific breakout sessions will take place Thursday night. On Saturday evening, families are invited to a banquet dinner! There’s no dress code for this event; you’re welcome to dress up in your finest party attire or be relaxed in shorts and flip flops.