Lion’s Heart: Teens Giving Back To the Community for Rare Disease and Tribute to Champions of Hope Gala

“It’s a small world” is a term we tend to use when we meet others by chance.  In the world of RARE disease, that chance meeting may only occur through supporting organizations or others with the same circumstance.

In the chance friendship of our very own Founder, Nicole Boice’s daughter Chloe and soccer mate Skylar and her brother Sloan, their meeting made a difference for those with RARE disease.

Chloe Boice, age twelve, met Skylar on the Blues soccer team in Coto de Caza, a beautiful town located in Southern California.  In 2011, Skyler, Chloe, and a group of soccer players made denim ribbons for distribution for the “Wear That You Care” Global Genes campaign for World Rare Disease Day.   Their friendship grew and so did their support for RARE Disease.

Skylar and her twin brother Sloan, belong to a national charity organization called Lions Heart, a community service organization specifically geared to teens who are dedicated to serving their community in a meaningful way.

Located in Orange County, California, in order to be a contributor to Lion’s Heart, enrolled members are required to follow specific guidelines geared to non-profit charitable service.  With Chloe’s connection to R.A.R.E. Project, the twins excitedly chose  R.A.R.E. as their community service project.  They chose to make bracelets for the Tribute to Champions of Hope Gala on September 27, 2012.

Not just any bracelets mind you, but 250 beautifully crafted, paracord bracelets in different shades of blue.  It took skill, determination and patience for these outstanding volunteers.  First, measuring 100 inches of paracord, individual strands were intertwined into braids.  Once each thread of braid met their approval, continuous braids were created and sealed by carefully burning the ends with a lighter.  And Skyler and Sloan worked tediously, with constant braiding and intertwining, literally to the point of aching hands and fingers.

Their compassion for helping others, and dedication to those 1 in 10 individuals who suffer from RARE disease, was in part a contributing factor to their successful project. Their kindness and outreach will be remembered, by Tribute event attendees, patient advocates and award recipients.  Their bracelets, a compelling statement of how even children understand the need for supporting others with RARE disease.

To Skylar and Sloan, Global Genes | R.A.R.E. Project thanks you for your outstanding volunteerism, and for sharing your passion for helping others at such an important occasion.