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Head of the Herd: Bonnie Royster, CdLS Foundation

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At the head of the herd is… Bonnie Royster, Executive Director, Cornelia de Lange Syndrome (CdLS) Foundation

Bonnie most frequently checks her… Facebook 

Bonnie advocates for those living with… Cornelia de Lange syndrome, or “CdLS”

Bonnie is located in… Avon, CT

How Bonnie got here…

I have a corporate background in operations…but my heart has always been grounded in helping people. My work at United Way prepared me well. It took a bit of time to understand the profoundness of CdLS and its impact on families. I’m all in now! I love using my skill and expertise in a way that is meaningful to our families – raising awareness and being the chief executive advocate for them.

What’s happening at CdLS Foundation… 

Our mission has evolved. Initially it was to help with the CdLS diagnosis. Over time we have built a vibrant community of researchers, clinicians, volunteers, and parent experts who are helping us better manage the complications of living with CdLS. Today, our approach is more holistic and includes self-care and tending to the care of the other family members who also live with the challenges CdLS poses. We have 6 gatherings a year where we fly out to different regions to meet with families. We also hold 3-4 clinics a year, webinars, and field phone calls from across the country. We are also beginning to branch out to include other similar rare diseases. See our website for more: https://www.cdlsusa.org/

The plan for 2020…

We have our biannual conference, and this year we hope to create a conference that will give people medical updates, but also provide comfort to each other. We are thinking more broadly about healing and want to teach self-care as a part of the overall care for their child with the CdLS syndrome. Our goal is to treat this more holistically. 

What’s working now…

Our fundraising is very events-based. We hold “Team CdLS” events, such as walks, races, and biking. We also hold golf tournaments and use the Facebook/social media fundraising capabilities. It is a way for people to engage with us, each other, and give back. It goes beyond raising money. 

Bonnie’s lessons for other leaders…

Always act as a leader, even outside of your role. Lead from the heart more. It is also so important to build empathy. It is the driving force for me. 

Bonnie’s outlook…

The international conferences give me hope, because I see these top professionals around the world unite together to make life easier for our patients and families. Also, continuing research keeps me hopeful. Although we don’t yet have a cure, we understand CdLS so much better than we used to, and we have international treatment guidelines. 

Bonnie’s most recently used NORD service… NORD’s Rare Action Network and the State Report Card.

Lessons learned… I learned early on that leadership is not about that title, but about how and who you are as a person. 

Bonnie wants you to read… Love is Just Damn Good Business by Steve Farber and The Art of Gathering by Priya Parker 

Bonnie would rather be… singing.