What if all the Mexican restaurants shut down, the workers swept up in mass deportations?
What if your nannies were sent home to wherever they hailed from, handing the diapers and the child care work back to you?
What if all of the landscape workers departed, leaving the dandelions and piles of autumn leaves for you to pull and rake?
What if all of the immigrant construction workers, house cleaners, dishwashers, cooks, car mechanics, skilled and unskilled laborers raising up our city were sent home to Venezuela, Poland, Mexico, Ireland and elsewhere, having found that the American dream was no longer their dream?
Then on that morning, with what dream, where would we be left?
Bill Carroll, Roscoe Village
Helping those living with sarcoidosis
Far too often, nonprofit leaders tend to listen to the loudest voices in our communities but don’t do the work to hear the voices of those who have been silenced or haven’t been invited to the table. However, I firmly believe that following science is the path to providing the greatest understanding of a disease.
In my current role as the president and CEO of the Foundation for Sarcoidosis Research, I quickly learned that the rare disease we’re fighting disproportionately impacts the Black community and especially Black women. Research and clinical trials are necessary for us to better understand why Black people have a significantly higher risk and worse outcomes of the systemic granulomatous disease. To learn more, we developed a national Institutional Review Board-approved survey with over 400 patients participants that revealed one of the most significant barriers were job-related challenges, such as lack of time off from work and fear of job loss.
We knew that the barriers identified were not unique to sarcoidosis, so we partnered with 27 other organizations to launch the Coalition to Transform Clinical Trial Engagement and conducted over 40 Capitol Hill visits to help us amplify the need to get clarity on whether the Family Medical Leave Act applied to trial participants. Eventually, the Department of Labor sent the Foundation for Sarcoidosis Research a six-page response letter clarifying that the Family Medical Leave Act extends to anyone who participates in clinical trials, including family member caregivers.
This clarification means that patients do not have to choose between keeping their jobs and contributing to research that could change their lives and the lives of others. By securing clearer protections for medical leave, the Foundation for Sarcoidosis Research is helping remove one of the most pressing real-world barriers to participation in medical research and care for our nation.
This was achieved by listening closely and carefully to our community, working with other aligned organizations and by seeking practical solutions to improve the lives of those with the greatest need.
Mary McGowan, president and CEO, Foundation for Sarcoidosis Research