Rare Leader: Karen Proudford, President, William E. Proudford Sickle Cell Fund

The Basics
Name: Karen Proudford

Title: Co-founder and president

Organization:  William E. Proudford Sickle Cell Fund

Social Media Links:

Disease focus: SCD is a group of inherited red blood cell disorders. It is a genetic disease that causes oxygen carrying red blood cells to become hard, sticky, and misshapen. The condition leads to a shortage of red blood cells and they can clog the flow of blood. The condition can cause pain, infection, anemia, and stroke.

Headquarters: Baltimore

How did you become involved in rare disease: After my father, who had sickle cell disease, passed away, our family become involved. We hadn’t known that he had the disease, or any specifics about it.  When my siblings and I became involved in his care, we found out that he had the disease. It was a struggle finding physicians who were familiar with sickle cell and who understood how to treat the disease, and how the disease is related to other health issues. As we became active in sickle cell, we were surprised at how little we knew, and how little was generally known, which led us to think about how we could help.

Previous career: Currently is a business school professor

Education: B.S. in accounting from Florida A&M University; M.A. and Ph.D. in management from the University of Pennsylvania

The Organization
Organization’s mandate: We support evidence-based, multi-disciplinary, culturally competent treatment for sickle cell patients and their families; raise awareness about the disease; and advocate for increased funding, improved care, and a universal cure.

Organization’s strategy: We establish partnerships in just about everything we do to access and broaden expertise – and hopefully generate impact – especially in the areas of awareness, advocacy, and education.  Because we are small, our focus is on working with partners to create or “seed” opportunities that might lead to larger initiatives or programs that support patients, families, and health professionals who focus on sickle cell.

Funding strategy: It’s varied. Corporate, institutional, and individual donors support our work.

What’s changing at your organization in the next year: COVID is changing the way we view our work – we want to help meet the urgent needs of patients and their families, many of whom are among the hardest hit by the pandemic, either because of sickle cell or because of socio-economic factors.

Management Style
Management philosophy: Find great people and create a space for them to develop and succeed. Ask people to think about the big picture and to think long term.

Guiding principles for running an effective organization: Establish a culture and try to find people who understand and buy into that culture. It makes communication, decision-making, and other things easier.

Best way to keep your organization relevant: Stay in touch with others in the sickle cell and rare disease spaces to understand current challenges.

Why people like working with you: We combine passion with a results-orientation to get things done and we partner with others constantly. We try to think about the big picture—not just what will move our organization forward, but what will move the overall effort forward.

Mentor: I’ve had many wonderful mentors who helped us envision the work, and provided guidance and support in a variety of areas. We would not have been able to move forward without having generous people share their expertise and wisdom with us. Our first event was successful, but it also felt overwhelming to think about what would come next. I remember one person saying to me, “Just keep going.” I’d also heard a well-known businessman say that, “It doesn’t have to be perfect.” Some events/activities are successful, some don’t work at all. There are lots of stops and starts. You have to adjust and tweak and rework things, all of which is okay. Just keep going.

On the Job
What inspires you: Our father, the inspiration for the organization, and our mother, who was a co-founder. We keep their values in mind as we approach this work. The courageous people—sickle cell warriors—who live with the disease every day are an inspiration.

What makes you hopeful: Seeing the new therapies and advancements makes me very hopeful that a universal cure will be found soon. It’s exciting to see the energy, passion, and commitment of researchers and other stakeholders. Also, some people living with sickle cell are living longer—reaching their 50’s, 60’s, and beyond—that gives me a great deal of hope.

Best organization decision: Deciding to partner with people and organizations that bring complementary sets of skills to the table.

Hardest lesson learned: Passion alone isn’t enough. There are lots of challenges trying to start and sustain an organization.

Toughest organization decision: Finding an area of focus and avoiding the tendency to try to be everything to everyone. There are many needs in the sickle cell space, and it’s tempting to try to be helpful in a variety of areas. We’re a small organization, though, and really needed to focus so that we could try to have some impact.

Biggest missed opportunity: Probably relates to the media in some way, since we tend to keep a low profile.

Like best about the job: Meeting and working with wonderful people – patients, families, physicians, and health care professionals who are in the sickle cell space; but also people who may not have a direct connection to sickle cell but who are community-minded and really committed to helping others.

Like least about the job: Paperwork is hard and tedious, but necessary.

Pet peeve: Going around and around the same mountain without making any progress.

First choice for a new career: I’m not sure. I’m busy right now.

Personal Taste
Most influential book: Drylongso: A Self-Portrait of Black America by John Langston Gwaltney. It is an oral history of life as an African American, told in the words of extraordinary, ordinary men and women.  It was like sitting at my grandmother’s knee and being told stories about her life.

Favorite movie: Terms of Endearment

Favorite music: Old School R&B

Favorite food: Tacos

Guilty pleasure: Chocolate

Favorite way to spend free time: Watching HGTV