Inspired by Kyndle’s selfless enthusiasm for others, we decided that it’s time for this cheerleader to move from the sidelines into the spotlight. It took months of coordination, but we partnered earlier this year with the incredible team at Global Genes, one of the leading rare disease patient advocacy organizations in the world, and our rare disease promotional partner. With the mission to eliminate the challenges of rare disease, they build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease. Together we planned a partly secret co-branded grant!
Global Genes flew Katie and John from their home in Kentucky to Huntington Beach, CA, put them up at the Hyatt Regency Resort & Spa, and awarded free entry to attend the entire summit. Unbeknownst to them, attending the RARE Patient Advocacy Summit was only the beginning. Chive Charities’ Senior Program Director, Angie Cone, and Director of Strategic Development, Erika Carley, met Katie and John at the summit. Staying tight-lipped about the surprises ahead, Angie and Erika did a little coaxing (and a little deception), and got these amazing parents to the Global Gene’s Gala — the last event of the summit. There they were given the opportunity to present one very deserving, unexpecting family with a $53,000 grant for a 2016 BraunAbility Wheelchair Accessible Dodge Grand Caravan SXT. We could think of no one more worthy than Kyndle and her family.