‘Rose Up’ Virtual Event Raises Funds, Awareness
Cystic fibrosis (CF) patients, caregivers and supporters are invited to participate in Rose Up, a Sept. 17 virtual event aimed at uniting the CF community and raising awareness and funds to help find a cure.
The hope is that the Cystic Fibrosis Foundation (CFF) effort, now in its second year, will raise $350,000 to help the nonprofit organization support CF patients and families and back research. So far, pledges have surpassed $155,000.
For the event, participants are encouraged to be creative and engage in activities that are meaningful to them. During last year’s #ROSEUPCF, which raised more than $100,000, some participants did 65 pushups, ran 6.5 miles, and baked 65 cupcakes. Others jumped into a pool of roses, shaved their heads, or danced.
The significance of “65 roses” in CF dates back to 1965, when a 4-year-old boy, upon hearing the name of his disorder for the first time, pronounced it that way. Children still widely use this term to refer to their disease. 65 Roses is a registered trademark of the foundation.
Rose Up was conceived last summer, when a group of adults with cystic fibrosis came together virtually to create a novel fundraiser.
“Inspired by the strength of the CF community, especially during the pandemic, they wanted to find a way to unite and help the CF Foundation get one step closer to finding a cure for all,” the organization states on an event webpage. “The CF community is extraordinary. Together, we have made incredible progress but not every person with CF can benefit from existing therapies. We have more to achieve.”
Participants are asked to share their Rose Up doings on social media using the hashtag #ROSEUP. Event ideas include: running, biking, walking, or swimming; thanking a care team for their time and dedication; releasing a butterfly or balloon in honor of patients who passed away; thanking donor families; baking a Rose Up cake; wearing “superhero” garb; meditating in gratitude for the CF community; having a virtual dance party; organizing a drive-by ROSE UP parade; planting a rose bush; making paper roses for gifts; singing or reading a poem; cannonballing into a pool of rose petals; and drawing a rose.
Visit this webpage to register for the event.
“To me, Rose Up is an opportunity to unite the CF community together,” said Nicholas Kelly, 33, a Rose Up committee member, on an event webpage. “It allows people with CF and their loved ones a chance to showcase that we are connected through more than struggle and hardship. We are connected through passion as well.”
Another committee member, Andy Lipman, 47, said “Rose Up means showing the world that people with CF can make a difference. I want to continue to inspire our community in memory of my mom and sister.”