2018 Charlotte DYRK1A Family Meetup Conference
On July 14th, we had another successful DYRK1A Family Meetup held in Charlotte, NC at the Crowne Plaza Charlotte Executive Park. There were 24 families in attendance with approximately 120 people all together. In addition to having speakers and family discussion on Saturday we also had a pajama ice-cream social dance party in the evening. On Sunday we gathered at the Discovery Place Nature and enjoyed a planetarium viewing.
If you attended and didn’t get a chance to donate and would like to, please do so here on paypal; https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=S7VN8QGX8GQCL
Speakers
Jennifer Tjernagel, Simons VIP
Rachel Kincade Earl, Ed.S., Graduate Research Assistant, Bernier Lab
Video - at 28:30
Robert S Greenwood M.D. Prof. of Neurology at University of North Carolina
Video - at 7:30
Family Group Discussions
Jackie Ray - Processing Grief & Taking Care of Yourself
Anne Cobb - Puberty & Beyond to Adulthood
Ted Hans III - Daddy Talk
Adrianne Apodaca - Development Progress, Tips & Resources
Carol Streatfeild - Health Topics, Treatments & Recommendations
DYRK1A Syndrome International Association
A common theme from our speakers really highlighted how patient communities can advance the understanding of rare conditions. It further validated the need for our community to work together to push research forward.
DYRK1A UK Community received their charitable status
DYRK1A US needs to move forward with becoming a non profit 501c3
Initial discussions was that we would move forward with a paid service.
After the discussion; Amy was approached by a grandfather of one of our DYRK1A kids, he has done a lot of charitable work including filing multiple different 501c3 tax exemption status paperwork. He is willing to do this for us, so Amy will make contact with him and see how we can move forward.