Last Tuesday night, I was honored to attend the NORD Gala with fellow team members Kai and Kristen.Â Â The Gala celebrated 30 years since passage of the Orphan Drug Act and included moving speeches from some of the most influencial leaders in the rare disease community.Â I was very fortunate to have had the opportunity to sayÂ a fewÂ words about our team and thought it was worth posting my speech.
On Saturday, April 13, 2013, 18 marathon team members including 16 employees and 2 rare disease community members, their families, NORD representatives and 13 patient families, nearly 100 in total, came together for the first time as one community.
Patient families traveled from across the county including, Arizona, Michigan, Wisconsin, Ohio, Pennsylvania, Maryland, New Jersey and of course Massachusetts to be a part of this amazing weekend.
We connected, shared stories, embraced, and almost instantaneously became a family.
The evening was so special for all who attended.
On Monday morning, we reconnected for breakfast with the excitement of the day looming in our minds.
At 8am, all runners boarded the bus for Hopkinton and at 8:30, patient families headed off to join the rest of the running for rare diseases community at mile 14.
Imagine the feeling being at the start of the historic Boston Marathon on this spectacular day with 17 members of your family, all focused on making a difference on behalf of this greater community.
As we approached mile 14, full of energy, at the peak of fitness and in perfect weather, we were greeted by 50 screaming family members, all wearing warrior paint in honor of ‘Wylder the Warrior’, my 3 year old patient partner who tragically passed away from Neimann-Pick disease last July. It was so incredibly moving and so motivating that it helped set the stage for what followed, the most challenging portion of the course…. Heartbreak Hill.
Just before 3 PM, tragedy struck. You all know the story. Many runners finished and some were not allowed to. Though we had runners near the bombing and community members at the finish line, by the grace of God and maybe Wylder’s angelic intervention, none of us were physically harmed.
To say that the hours and days that followed were surreal is an absolute understatement, but if we put aside the tragedy for the moment and look at the how the nation came together to support the people of Boston and how our greater community responded in support of our team, there is a level of humanity in view that surpasses or even overpowers everything else.
The level of visibility for our cause has never been higher. Passionate people are taking note and want to be a part of our community. Â Â It is all very exciting.
We will never forget those who were impacted by these horrific events but I will close by saying we are passionate, committed, resilient, and strong, and looking forward to significantly advancing our cause on your behalf in 2014 and beyond.