Rare disease community members gathering together.

Head of the Herd: Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America

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At the head of the herd is… Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America

Beverley advocates for those living with… sickle cell disease.

How Beverley got here…

I started working at SCDAA in 2018 because of my personal connection to sickle cell disease. I have a family member who is currently living with sickle cell disease and another who passed away due to complications when I was in high school.

The impact of COVID-19…

Patients have reported feeling anxious and concerned about the impact of COVID-19 on their health. They also have safety concerns about going to the hospital or doctor’s office if they have a crisis and ensuring they have their basic needs met (i.e. food, water, medical supplies, mask, hand sanitizer, etc.).

How SCDAA adjusted to COVID-19…

We’ve developed Patient Caregiver Advisories as well as Provider Advisories on COVID-19, which are updated weekly and disseminated worldwide through our website, social media, e-blast announcements, etc. The advisories have been translated into Spanish, French, Italian and will soon be translated into Arabic.

We’ve hosted a few webinars on COVID-19 as well and created infographics on mental health. We are considering hosting a virtual walk for the first time and also virtual fundraisers.

Beverley’s outlook…

I have now learned how tiring and isolating it is to work remotely and miss the things we take for granted (i.e. going out to dinner or the movies or traveling, which is my favorite pastime). I’ve used this time to enroll in workshops and webinars that are for my personal development and decided to read one new book per week.

Beverley’s go-to sources for COVID-19 information…

SCDAA’s Medical Research and Advisory Committee, the Centers for Disease Control and Prevention, and the American National Red Cross.

How Beverley remains hopeful…

I am generally an optimistic person whose faith guides and supports me when things seem bleak. I’m grateful that despite what’s happening in our country, there are so many examples of the goodness of people who give and support others. This is very humbling and uplifting for me.

Beverley’s social distancing pastimes include…

Reading, walking in my neighborhood, attending virtual family meetings/celebrations via Zoom and Google hangouts, staying in touch with family via text and phone calls, and watching movies on Netflix and Hulu.

Beverley’s most recently used NORD service…

NORD’s affiliate webinars.

Beverley’s lessons for other leaders…

It’s important to have a work/life balance. Develop relationships with other nonprofit leaders and partners. Listen to your patients. Don’t overpromise and lead by example.

Words of wisdom during hard times…

“Be thankful for what you have; you’ll end up with more. If you concentrate on what you don’t have, you will never, ever have enough.” – Oprah Winfrey