On Friday, November 5th, nearly 200 people gathered at Bacchanalia in Overland Park, Kansas for the 2nd Annual Jadon’s Hope – Climb4SMA Event. We had been working on this event for over 10 weeks and the big night was finally upon us. It was fantastic and far exceeded all of our expectations!! Kristin and our good friends Robin Gill and Brooke Gomez did an incredible job pulling everything together.
Guests were treated to an amazing spread while they browsed and bid on over 80 silent auction items. Jim Baker who is at the heart of Climb4SMA, was on hand to speak. Jim spoke about how he is dedicated to using his climb of Mount Aconcagua to raise funds and awareness for SMA and how he takes his inspiration from Jadon. There really are a lot of similarities in climbing to an altitude of 23,000 feet and living with SMA. The biggest is how difficult it is to breathe.
We were incredibly honored and humbled to have two very special out-of-town guests join us. Bill Strong, co-founder of The Gwendolyn Strong Foundation, flew in from Santa Barbara, CA and Dr. Christian Lorson, Scientific Director for Fight SMA, drove in from Columbia, MO. Bill spoke about The Gwendolyn Strong Foundation and his precious daughter Gwendolyn. Bill and Victoria know the effects of SMA all too well as Gwendolyn was diagnosed at 6 months of age. Dr. Lorson spoke about gene-therapy research that is so incredibly promising and the impact this research has not only on SMA, but many other neurological disorders. It was so encouraging to here the potential of these studies. This research is why Climb4SMA exists.
Following the live auction, Kristin did an amazing job sharing Jadon’s story and life with SMA. I truly wish that I could speak as well as she does. I was so incredibly proud of her as I always am. Following a very un-smooth transition to a video I read what is intended to be a book, but with the pictures I guess it would be considered a poem. I wrote the poem titled “The Bug” to illustrate how Jadon has touched so many lives and shown others how short life really is. More importantly how to live life like every day is your last. The most impressive part is that I actually got through it without breaking down. That would be short lived.
After this we did a somewhat impromptu “Fund the Need” auction. This was to be a time when people could donate directly to Jadon and his care. We were initially against this portion of the evening when it was suggested because it wasn’t in line with purpose of the event. It was pointed out that people wanted to be able to help us as well as help fund a treatment. They wanted to donate directly to us. With some upcoming medical expenses that will not be covered by insurance we reluctantly agreed. Oh my! I completely lost it! People were donating out of their minds. The feeling in the room was amazing. The love that we felt was completely overwhelming. I guessing that was pretty obvious when all of that stuff kept getting in my eyes. They just wouldn’t stop “watering”. Awwww forget it, I was bawling my head off.
Jadon has been a blessing since the day he arrived but the surprise has been the blessings that he has brought to us. In this most difficult of life’s challenges we have been blessed beyond belief. If anyone out there thinks there aren’t any good people left in the world, come stand in our shoes. There are so many amazing people and we are honored to call so many of them our friends.
It has kind of become our tag line. We don’t have any idea how to begin saying thank you enough, so we will just keep on saying it. THANK YOU!!
And now…..drum roll please…..the 2nd Annual Jadon’s Hope – Climb4SMA Event raised over $11,000!!! WOW!!