Thursday, June 29, 2017

2017 Vasculitis Foundation Symposium Recap


What a weekend!  I can't believe it came and went so quickly.  For the last several months, I've had the International Vasculitis Symposium on my calendar.  It was the only thing on my calendar for months.  Since I'm used to traveling and racing all over the country for about 2/3 of the year, sitting at home since January has been a far departure from my normal chaotic lifestyle.  For someone who finds so much comfort in his routine, I sure do like to travel a lot.  Besides looking forward to the travel part of the weekend, I was also excited to get to share my experience with other young adults through a presentation as well as meet many members of #VFTB (Vasculitis Foundation Team Brandon).

Myself, along with 3 other incredible young adults (Ben Wilson, Kate Tierney, & Allison Lint) were giving the chance to do a presentation for young adults, which we titled "No Parents Allowed."  The goal of the session was to pass along some of the knowledge of dealing with a Vasculitis disorder and navigating the waters of young adulthood (ages 15-30).  So the 4 of us old geezers (some of us wouldn't qualify to participate in the session if we weren't presenting haha) set out to make a lovely presentation to impress these young budding minds.  Well after 2 sessions (we were only scheduled for 1) and over 3 hours of talking, we never even got halfway through our slides.  We couldn't be happier about that.  For months leading into the presentation, we were all worried about making sure that we kept the presentation "real" and not lecturing in order to encourage the group to participate and get involved.  I can't speak for the others (Ben, Kate, & Allison please chime in), but I was blown away with the attentiveness, intelligence, and personality of everyone that attended the session.

As someone who has given many talks, lectures, and even a few teaching lessons in my day to this age group range, we always struggle to find ways to make it fun for this new generation of iphone kids.  After this weekend, I actually have some... faith, for the future.  Luckily the hours that the 4 of us spent to get the presentation ready, wasn't wasted.  We got to do far more than was on those slides.  So if you are one of the 25 or so kids that attended the session, participated, shared, and encouraged the group I'd sincerely like to thank you from the bottom of heart.  It's my desire that you all got as much from listening and asking as we all got from being able to share our pitfalls and successes dealing with life and a crazy rare disease.

Over the last 6 months I've said time and time again, I have been completely overwhelmed with the response and the level of encouragement that #VFTB members have shown for myself and for each other.  The original goal of #VFTB when I started was to use my platform as an athlete training for the Olympic Trials to inspire others to chase their dream no matter their lot in life.  What I never expected was how much everyone would inspire me.  That couldn't be more true this weekend.  It was amazing to get to meet so many of you face to face.  I want all of you to know that you are all responsible for how I've handled this relapse that I am currently suffering with still.  If it weren't for the encouragement and constant uplifting responses you all have shared, then the last 6 months would've been a lot darker.  My heart was filled with warmth getting to hear you all share your stories and how #VFTB has lifted your head up and put you in a better place.

I'd like to thank everyone at the VF for their tireless work and assembling a group of doctors and speakers that are leading the way in Vasculitis health.  As a scientist, it's incredibly encouraging to see the work being done in so many fields as it applies to our disease.  Thanks to these people, the life of vasculitis patients worldwide are improving every year.  While obviously the goal is always to find a cure, we are all aware that that day may be further in the future than we want, we have faith that there are doctors and scientist out there working diligently to get there.  Science is the future!


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