Daring to lead in rare disease
Over the past year, we’ve had some incredibly courageous people come talk to us at AVROBIO from the Patient Advocacy communities that we work with. I played them back in my mind as I listened in to a very powerful conversation between Slalom CEO Brad Jackson and Dr. Brené Brown, who shared her thoughts and insights on her 10 years of deep research on leadership.
I thought of the many examples we heard from the Patient Advocacy leaders who drive to make a positive difference, pushing the envelope from what is to what is possible, in pressing for the very best care for those they represent. There are so many, and they all bear mentioning, but for the moment, I will highlight two in particular:
- I thought of a biochemist with Gaucher disease type 1, of how her dream of becoming a ballet dancer was thwarted by the debilitating effects of Gaucher disease on her body. Unfazed by her diagnosis, she studied biochemistry and has become a leader in technological innovation and R&D in healthcare and chairwoman of the Israel Gaucher Association. This was not an easy series of transitions, and it took courage to pave this path.
- And I thought of a mom whose son lives with cystinosis, and how she’s worked towards rare disease equality in her community. She’s had to face down physicians and educate them — putting herself in a vulnerable position as she repeatedly demanded that her son receive the right diagnosis and appropriate medical attention. Her journey was nothing short of courageous.
How does this correlate with Brené Brown’s talk? Her fundamental premise about leadership is courage and vulnerability. First and foremost is the courage to be clear about who you are, to stand firm on your beliefs and values, to not change who you are to fit in. This is often hard because as humans we are pre-wired to connect; sometimes people compromise their own values and belief systems just to belong.
Of everything I heard from this discussion, the point that resonated most for me was that being all-in requires you to be willing to be vulnerable, to stay in the arena even when it’s painful.
The measure of courage is how willing we are to be vulnerable. She stresses that vulnerability is not about failure, it’s about embracing discomfort; you may not be able to control the outcome, but you still show up, wading into uncertainty, to take risks and to lay bare your emotions. All the patients, caregivers and activists who came to share their stories with us exhibited this kind of courage and leadership. Their stories, and their examples, spur us on as we seek to help their communities with our investigational – and potentially transformative – lentiviral gene therapies.
I am curious what you think about courage and vulnerability: How you see it in our PA allies and where you see it in yourself? If you are interested in hearing more on the topic, watch Brené Brown’s fine TEDTalk on vulnerability and courage.