National BDSRA Conference

Very excited to have the conference here in Charlotte this year.  Need to say a HUGE, HUGE thank you to our conference chairperson Charlie Leffler and his better half Wanda for the TREMENDOUS job of planning for this conference.  Unbelievable. We are expecting over 350 people including families, speakers, staff, friends, volunteers and scientists to attend beginning Thursday evening to celebrate the 25th birthday of the BDSRA.  Brandon and Jeremy are excited to go and are looking forward to Grandma and Grandpa Hawkins being here for a few days too.   The next few days I know are going to be emotional, I will have tremendous highs and just as tremendous lows.  What IS consistent though is the resilience and resolve of these families to LIVE, LOVE and ENDURE.  It amazes me that just when I think that I can’t take any more, someone does or says something that blows me away.  Last year it was Becca Collins at the Noah shoe auction.  Noah Coughlan, for those that don’t know, ran across the USA from San Diego, CA to Jacksonville, FL last spring.  It took him several months and over 12 pairs of shoes but he finally waded in to the Atlantic on July 9, 2011.  There was an auction on Friday evening for these shoes and Becca who is non verbal, kept upping the bid until her Dad finally won the shoes.  I love this photo shortly after the auction.


I wonder what that moment is going to be this year?  Guess there’s only one way to find out.  I will let you know next week.




I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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