As we continue to work tirelessly towards our goal of creating transformative medicines for people with serious and life-threatening diseases such as CF, we are cognizant that our role in their journeys does not stop in labs or research facilities. We strive to create transformative impact on people’s lives, not just their health. One of the ways we bring our uncompromising commitment to patients value to life is through the Circle of Care grant program. Each year, we award funding to programs from the global CF community that support those with CF to live fuller, more engaged lifestyles. We’d like to highlight two wonderful organizations — Cystic Fibrosis Queensland in Australia and Claire’s Place Foundation in the United States. These programs share many of our hopes for the CF community, and we are honored to support them in their initiatives.
Cystic Fibrosis Queensland and the “Transition? What’s this got to do with me?” guide
The transition from pediatric to adult care can be an incredibly anxious time — for anyone. Managing a chronic disease like CF and living in a rural, regional or remote area can add to the challenge, especially for teens who have been attending appointments independently. In Australia, current treatment regimens may allow teens to live farther away from their multidisciplinary team, so ensuring they maintain clinical adherence and open communication lines with their providers is crucial.
Through a Circle of Care grant, the “Transition? What’s this got to do with me?" guide was developed independently by Cystic Fibrosis Queensland. According to Petrina Fraccaro, CEO of Cystic Fibrosis Queensland, the driving force behind the project was “to develop autonomy and support clinical adherence at the same time” as teens transition to adulthood—addressing an unmet need. The guide provides downloadable resources on the transition to adult care for a variety of areas including physiotherapy, exercise, medication routine, emotional and social well-being, and more. It also provides two transition checklists that encourage teens to reflect on their comfort and knowledge around navigating their care with their team of providers.
Funding through the grant made it possible to work with people across a variety of skill sets and build training to enable community members to conduct the research and interviews.
Reflecting on the process, Petrina noted, “It is important to include as many voices as possible in community projects, so it is important that a team member take on the role of project coordinator to work with everyone, across the diverse skills sets, to ensure that people feel included and of course, to get the best outcome.”
Claire’s Place Foundation and the Work Proudly Program
Living with CF or being a caregiver can also provide a unique set of challenges when it comes to employment. That’s why Claire’s Place Foundation, based in the U.S., applied for a Circle of Care grant to create the Work Proudly Program. This program enables participants to explore career paths by covering the cost of certification programs; offering essential technology and job-readiness support; and partnering with other organizations for items such as laptops, internet service, career coaching and online training. The Circle of Care grant allowed them to pilot and accelerate the program to what it is today.
With the grant, the Work Proudly Program was able to continue executing on their mission of fostering sustainable remote employment and increasing the independence, stability and confidence of those working while living with CF. Moving forward, Claire’s Place hopes to enroll more participants, expand their training offerings, and track long-term outcomes.
Claire’s Place Foundation aims to provide members of the CF community with tools they need to achieve financial stability without compromising the needs of their health. Executive Director Melissa Yeager shared that “Work Proudly has shown us that flexible, remote careers aren’t just helpful, they’re transformative,” a message aligned with our goal of having a transformative impact on people with serious diseases.
Melissa also shared that, “Thanks to this support [of the grant], we were able to serve participants like Jennifer, whose health challenges previously made it difficult to maintain employment. With our help, she now has a flexible, remote career that accommodates her health care needs while providing a competitive income.”
Building resources for the community by the community
Cystic Fibrosis Queensland and Claire’s Place Foundation share a common goal of helping people with CF navigate everyday activities and responsibilities. At Vertex, we live our uncompromising commitment to patients value in everything we do — from our relentless research to our patient support programs to our grants and awards — and we are passionate about supporting programs like these through our Circle of Care grant program.
Interested in learning more?
We are grateful to Cystic Fibrosis Queensland and Claire’s Place Foundation for sharing these stories and are passionate about continuing to support organizations that are developing innovative, patient-centric programs for the CF community. Through the Circle of Care, our hope is that the patients, caregivers, and advocates who make up this community feel supported to live even fuller lives.
For more information about our Vertex CF Research Innovation Awards and Vertex Innovation Awards, check out Advancing independent research in cystic fibrosis.
The award cycle opens each year in late summer/early fall. For more information, please contact vertex_grants@vrtx.com.
Check out all our grants and giving initiatives at https://www.vrtx.com/responsibility/grants-and-giving/ for more information on grant criteria and what Vertex can and cannot fund through these programs.