Honoring Special Batten Community Members – Moonbeam Awards
Moonbeam Caregiver Award – For Caregivers
The Moonbeam Caregiver Award was originally created in honor of Ethan’s first caregiver, Lori Peickert. It was awarded to Lori on September 6th, 2014, at the first annual Ethan’s Reason 5K event. From there, it turned into an annual award presented to an exceptional caregiver of individuals with Batten Disease or other Rare Diseases who exemplifies “a shining example of caring and compassion” by providing care with the utmost compassion, respect and focus on quality of life. After 10 years of selecting some amazing individuals upon which to bestow this award, we are now transitioning from honoring adult caregivers (from child care workers, to nurses, to paraprofessionals, to home health aides, and parents, etc.) to now placing a spotlight on youth and/or adult siblings through our Mighty Moonbeam Award.
NEW: Mighty Moonbeam Award – For Siblings
The Mighty Moonbeam Award is our new award being granted to siblings (youth to adult) for their role in “shining a ray of light” into the lives of their sibling(s) with Batten Disease. Siblings (“sibs”) experience all the ups and downs, the highs and lows, and everything in between that comes along with having a family member with a rare, life-limiting disease. Sibs may bear the weight of extra challenges, stress, divided parental attention, uncertainty for the future, and grief, but through it all they may also become fierce advocates, compassionate caregivers, resilient teammates, and empathetic confidants. Our Mighty Moonbeam Award aims to provide recognition to those sibs who could use an extra boost of acknowledgement through a token of simple joy.
