Leap Year Special: A Rare Day in Support of Rare Diseases
Our chaplain and division heads invite you to support “Friends of Frances” on Monday, February 29th, Rare Disease Day, with a dress down day. This day of awareness was launched in 2008 and has become an international awareness day for those who live with rare diseases. Fifty percent of rare diseases touch children. Frances Brown (Daughter to Ashley & John Clark Brown an EDS graduate, and little sister to John T Brown) is one of them. She was born with Macrocephaly-capillary malformation (M-CM), a multiple malformation syndrome causing abnormal body and head, overgrowth and abnormalities of the skin, vascular system, brain and limbs. The team was created to promote awareness for children like Frances who live with rare diseases or special needs.
This year is special (all years are special). This is our FIVE YEAR ANNIVERSARY! The past year has affirmed again and again that every day life is precious. Frances is a fighter and defeats odds at every turn. We will celebrate Frances and all those children with rare diseases on February 29th with a dress down day. If you would like a red Friends of Frances t-shirt to wear, here is the link to get a shirt.
This year’s proceeds will go towards an adaptive bike for Frances. 25% of the raised funds will go towards an additional need for equipment for another local child. Frances will be a part of that decision.
Please come out and support Friends of Frances. If you have any questions, email Kelley Norris.
Be the first to write a comment.