One need look no further than the name of the Cystic Fibrosis Foundation‘s Impact Grant program to figure out what it does — helping those affected by cystic fibrosis (CF) serve their disease community in creative ways that matter.
The CF Foundation is currently accepting applications for the 2021 award round, which gives individuals or organizations one-year grants up to $10,000 to benefit the lives of those with CF in areas not related to medical research. Grant applications must arrive by April 5 at 5 p.m. EDT.
Past Impact Grants have funded programs that include: the sINgSPIRE Virtual Choir, whose 18 members all live with CF in their respective parts of the world; “Fall Risk: The CF Musical Comedy,” a theater piece based loosely on its author’s life; and CF Yogi, an organization that livestreams yoga classes for CF caregivers, parents, patients, and friends.
Adults with CF came to the foundation’s leadership in 2015 asking them to invest in the community by supporting ideas that benefit everyday life. The CF Foundation focuses on medical research, and through 2025 is putting $500 million toward finding a cure.
The adult community, however, felt that support also could go to efforts that tap into other unmet day-to-day needs.
“Let’s invest in the people that know it [CF],” said Piper Beatty, senior manager for strategic collaboration at the Cystic Fibrosis Foundation, of the inspiration to start the Impact Grant, in a phone interview with Cystic Fibrosis News Today.
Interested applicants must meet the program’s basic requirements — further the CF Foundation mission, include people with CF, create an original idea, and avoid giving medical advice. The full list of requirements is available on the foundation’s website.
Its Adult Advisory Council, a rotating group of 12 adults with CF, serves as the review committee for all eligible applications. Each member scores applications and provides recommendations to the Foundation’s vice president of community partnerships for final approval, contingent on funding availability.
Beatty’s team, which works in the community partnerships department, understands that not all applicants are professional grant writers. They are prepared to answer related questions and have hosted an informational seminar (available by request) about the Impact Grant program.
CF Yogi grew out of the 2018 grant awards. Co-founders Elaine K. Malik and Myra Giaffoglione used the $10,000 grant to offer free weekly and livestreamed yoga classes to the CF community via Zoom. The number of sign-ups jumped by 350 people from 2019 to 2020, for a current total of 1,350 participants.
“There’s that motivation of showing up because there’s someone there that you like, and that gets you and that you have a relationship with,” Malik said. “And you don’t necessarily get that from turning on a YouTube video to do a workout.”
Because of the virtual nature of the class, it was well-suited to the lockdowns that resulted from the COVID-19 pandemic. Donation-supported classes that are not just for people with CF were added in its 2020 program year, bringing more awareness to the disease. CF Yogi also added a virtual storytime for school-aged children, giving parents a needed respite during unstructured time in lockdowns.
Malik has CF and Giaffoglione has two children with the disease. Other Impact Grant recipients also are affected by the disease, making their programs by and for the CF community.
“The participants see members of their own community up there as the head,” said Beatty. “It’s not a doctor, it’s not a clinician, it’s not a nonprofit professional. These are people that have had the same experiences that they have.”
The CF Foundation added another year to the grant for CF Yogi, which would have expired in December. Because of the added challenges of the pandemic, the foundation made an exception and extended the grant until June. That means CF Yogi will get an extra $5,000 to pay teachers, buy equipment, and advertise its classes over a period of six months.
Malik and Giaffoglione also are applying for a CF Foundation Community Support Grant, which provides additional financial aid to former Impact Grant recipients. Malik’s next goal for CF Yogi is to create a regular weekly schedule of yoga classes for people now forced to work, play, and exercise at home.
Grant takes the stage
While the expanded Impact Grant helps Malik and Giaffoglione to get people moving and thinking about breathing, Nicole Kohr used her award to help people’s creative juices flow in “Fall Risk,” the musical comedy she is creating.
For Kohr, 28, a lung transplant recipient diagnosed with CF at age 5, writing and theater were coping mechanisms to help her get through daily challenges. Her dreams of Broadway and acting study were pushed aside by her worsening health. It took her a while, but she slowly realized what she had written could become a musical.
Kohr reached out to the CF Foundation, hoping to move her writings from her computer into a fully fledged theater production. She was awarded a $10,000 grant to start the process in 2019 and it was renewed last year. The funds helped Kohr create “Fall Risk,” a musical that mirrors her own struggles and triumphs with CF. She is also relying on the CF community, friends, and family to make it a reality.
The Impact Grant supported stipends for the seven board members who are helping to produce, market and write the musical. The rest of the funds went toward equipment needed for its cast to record virtually, and for shipping and miscellaneous production costs. Kohr said at least 50 composers, some with CF and some without, have contributed their own music and lyrics. People without music backgrounds also are invited to participate through feedback at virtual readings.
“Fall Risk” is still in pre-production, and the team’s latest online public event was a reading of the first act over the summer. The feedback from that reading is going into a second draft, which Kohr says is being fine-tuned in a workshop.
Kohr and her board then will license and publish the show. But, she said, it won’t be performed live until both the Centers for Disease Control and Prevention and the CF Foundation deem it safe for a theater audience to come together.
Kohr likens the process to “Ratatouille: The TikTok Musical,” released in January, which reimagined the classic animated movie with snippets of music, lyrics, and production from around the world.
“I think from all angles, we’re really bringing awareness to CF whether you want to just watch or whether you want to participate,” Kohr said. “And I think when all of us are in isolation right now, because of COVID, it’s, it’s kind of exactly what everyone needed.”
Both projects make the ultimate goal of the Impact Grant a reality — to help those with CF, as the CF Foundation website states, “live full lives.”
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