Although our goal was to run the marathon, which was an amazing experience in of itself, the journey involved the team training, patient partner interactions and fundraising made the experience worthwhile!
Not only was I able to foster an individual relationship with my partner, but the connection between both of our families was an added plus!
Running For Rare Video
For the last 2 years I have had the opportunity to be a part of a great family and patient partner that I have become close to. The relationship has grown to include my family as well.
The patient partnership was my favorite part of the experience. I was fortunate enough to be paired with a family that is very active within their disease community. They live local to me so I had many opportunities to interact with them. We are also “friends” via social media so we were able to exchange almost daily progress updates.
All in all, it was a great experience to meet the patient partners as well as patient advocacy members and members of NORD.
Community Partners Testimonials
Hearing my son talk at the team dinner about his relationship with his runner was really cool! Second favorite part of the experience was hanging out at Mile 14 and cheering on the runners.
I loved reading the blog and catching all the stories. Having this shared experience renewed my confidence that…we really are all in a better position if we can work together for common goals. The level of commitment and passion demonstrated by the team was inspiring!
The team dinner really highlighted to me the importance of what we do. I always knew it, but it was ingrained into my brain for evermore when I was listening to some of those stories of what it means to those families.
Our rare disease has a support group and we had the same feelings with the people we met through this experience. It’s not like we are walking alone – the support is overwhelming!
It was inspirational to have someone running in honor of my little girl. I believe he drew inspiration from her as well. She now asks about him all the time.
I loved the overwhelming love I felt from my runner. I loved the close bond that I made with her. She is definitely someone who I will be friends with forever.