As this has been a Barth Syndrome Foundation (BSF) conference year, I will focus much of my report on that important week. Barth Syndrome Foundation of Canada (BSFCa) was once again very involved in the conference. Lois was part of the steering committee, coordinated the travel and accommodations and logistics for the Science and Medicine presenters and worked at the registration desk. Devoted volunteers knitted sweaters for the Barth bears, mittens and scarves which were for sale at the conference with proceeds going to BSFCa. Silent auction items and contributions to the family gift bags were also provided by BSFCa.
We funded travel and accommodations for two Canadian scientists to present their research findings at the conference, sponsored the very well attended poster research session, a breakfast for all attendees and the popular photo booth at the evening social event. It was truly an inspirational week and we were delighted to help make it happen.
Chris, Susan and others have been working hard at getting our new website up and running. It is in the testing stage now and you will soon see the modern, easy to use look of our new site.
I would like to close on a personal note. My son Adam (now 24) and I were privileged to attend the conference again this year. We have attended every conference since the first one and will do everything we can to get to them all. This trip we do together every second year continues to be very special to both of us, and is the best gift we can give each other. I have never seen Adam as comfortable as he is during this week. He is among friends and family from all over the world.
The week lets him be himself, to learn and grow, enjoy the laughter and face the fears among people who accept and understand. The same is true for me. Not only do I get a week of time away and bonding with my son, I also get the chance to be among friends and my Barth family who understand what I am facing, accept me and help me through the challenges. Whether I meet the families for the first time or have known them for years, the bond and the support from this group is incredible. It doesn’t stop at the families either. I had some great discussions with scientists and physicians. I am truly inspired and very excited about the work they are doing.
It seems like the rate of progress is accelerating and we are getting close to recommendations and treatments that can really help in the daily lives of our affected guys. Together, the conference gives us a chance to learn, laugh, dance, help advance the research and enjoy the time with our Barth affected guys.
It was an outstanding week that renewed my inspiration and touched my heart.