Community News

We Will Do Better

Jun 5th, 2020

To the FA community,

Currently, we are confronted with the challenges of two public health crises: the ongoing COVID-19 pandemic and the enduring system of racial injustice in the United States.

The Fanconi Anemia Research Fund supports the Black community and recognizes the need for more action that demonstrates this support. Fanconi anemia does not discriminate by race, gender, or socioeconomic status. We have a responsibility to the people we serve to build and sustain an FA community that is inclusive and compassionate. We know that to accomplish this, we must deepen our understanding of systemic racism and how it disproportionately affects Black, Indigenous and People of Color (BIPOC). This can manifest in less access to healthcare, delayed diagnoses, underrepresentation in clinical trials, and far fewer matches in the bone marrow registry.

For people not directly impacted by systemic racism, including in recent events, the default response is often silence. Many avoid talking about race because they fear being seen as prejudiced, or they lack the skills to have difficult conversations around differences, so they adopt strategic colorblindness instead. It’s hard to find the words to address atrocities in our society. It is my responsibility to try, by conveying care and concern for all in the FA community, especially targeted groups. Yet that is not enough. The words of Dr. Martin Luther King Jr. remind me: “in the end, we will remember not the words of our enemies, but the silence of our friends.” We will not be silent. We will be engaging in conversations as a team and with our stakeholders about how we can better serve BIPOC families affected by FA, including increasing advocacy and representation, and expanding access to our services.

We reaffirm our commitment to a better and more equitable future in which all people with FA live full and productive lives.

The FA community is often referred to as “FAmily.” Let us keep supporting one another to make this an inclusive FAmily where all voices are heard as we unite in our shared mission to advance treatments and find a cure for Fanconi anemia.

Mark Quinlan
Executive Director