On January 1st, 2020, I became the President of the Board of Directors for Batten Disease Support and Research Association. I have been on the board for five years and a member of the organization since August 1996. My husband, Randy and I had three girls with CLN3 (juvenile). Sandy died September 2007 and Amber and Sarah died December 2009.
While the girls were only able to attend two conferences, San Antonio, Texas and Toronto, Canada, Randy and I will be attending our 21st conference in July. Despite the difficulties placed upon us due to COVID-19, we will be there, if not in person, in spirit and through virtual participation. The decision to cancel the conference did not come easily. We were not assured that the COVID-19 regulations would be lifted in time for the conference. We did not want to jeopardize the safety and well-being of our participants and so a decision was made to cancel the in-person conference. At the same time, we recognized the importance of the conference to our families. Canceling entirely seemed unfair and a bit gloomy. So, at the suggestion of our executive director and her staff at BDSRA, we decided to hold a virtual conference instead so that that people from around the world can attend.
Proceeding with the in-person conference would have been too risky and we did not want our families to put their beautiful children in harm's way. Without the virtual conference option, the price of the conference would have been a total loss for BDSRA. No one wanted to miss our family reunion. And while we may not be able to meet in person, we can still reunite and engage with one another virtually. We should look toward next year's conference (July 2021) and plan to connect with one another in person.
Your board of directors and staff want you to know that we are continuing to work for the betterment of BDSRA. We want to thank everyone associated with us, the families, doctors, medical personnel, and vendors for their amazing support.
Thank you,
Darlene Royalty
