Living with hemophilia or really any rare chronic condition can be quite challenging, and families who’ve just been diagnosed can often feel overwhelmed, lost, and alone. Believe Limited’s films, podcasts, and events connect patients and families to education, experts, and each other. We started with one project intended to help teens with hemophilia care just a little bit more about staying healthy. The success of that gave us a chance to create a piece intended to help normalize a bleeding disorders diagnosis for girls. That struck a chord too, and with every successful project, the scope of our work grew.
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Patrick James Lynch.
Patrick James Lynch is a filmmaker and advocate for people with bleeding disorders. Producing and directing credits include documentaries Bombardier Blood (2020; Executive Producer Alex Borstein), My Beautiful Stutter (2021; Executive Producers Paul Rudd & Mariska Hargitay), Poster Child (2021; in production), and the scripted films Elsewhere (2017; Best Picture HRIFF; Best Ensemble NYCIFF), sometimes, i think about dying (Sundance 2019, Oscars 2020 Shortlist), and Ryan’s Mom (Producer/Writer, in development w/ Jersey Films). Patrick can be seen as an actor in the Amazon Prime series Baker’s Dozen and heard alongside his wife each week on The BloodStream Podcast. Patrick is the co-founder and CEO of Believe Limited.
Thank you so much for doing this with us! Can you tell us a story about what brought you to this specific career path?
Well, that’s a big question! The short answer is that I went to theater school and began working as an actor and producer in New York starting in 2008. I had representation and was getting work, but I wasn’t fulfilled. I was also plagued by the recent death of my younger brother, Adam. We were both born with hemophilia, a blood disorder, and sadly when he was 18, he died from bleeding in his brain. I was 21, devastated, and when I came to understand that Adam’s death might’ve been avoidable had he been just a little bit better at taking care of himself, I partnered with filmmaker Ryan Gielen to start this mission of using entertainment as a vehicle for change within rare blood disorders. With Believe Limited, we focused first on reaching kids, teens, and newly-diagnosed families. Following the successful launch of our first project, a web series playfully titled “Stop The Bleeding!,” people began to ask what else we were working on. That’s when we understood we were really onto something.
Can you share the most interesting story that happened to you since you began leading your company or organization?
There was a period during the Fall of 2015 when, in less than three weeks, my producer, cinematographer, and I shot an entire feature film in Los Angeles (shout out to Elsewhere — 2017), flew across the country to attend a multi-day music festival that was subsequently shut down due to disastrous weather preparations (RIP TomorrowWorld), then flew to West Africa with a global non-profit to film a 10-part video series in four days as our first non-U.S. production. It was a wild, fast-paced time, and it really foreshadowed our rapid expansion into all forms of content, international production and working with global partners.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
Oh, wow. I’ve probably blacked out most of these. Let’s just say you can never check your CC and BCC lists too many times before hitting “send” on that email….
Can you describe how you or your organization is making a significant social impact?
Living with hemophilia or really any rare chronic condition can be quite challenging, and families who’ve just been diagnosed can often feel overwhelmed, lost, and alone. Believe Limited’s films, podcasts, and events connect patients and families to education, experts, and each other. We started with one project intended to help teens with hemophilia care just a little bit more about staying healthy. The success of that gave us a chance to create a piece intended to help normalize a bleeding disorders diagnosis for girls. That struck a chord too, and with every successful project, the scope of our work grew.
One of our most recent efforts is Let’s Talk, a documentary that features the journey of five people in the bleeding disorders community who open their hearts and candidly share the struggles and moments that brought them strength. For people with chronic conditions, mental health can be largely invisible unless people speak to it, this film does just that. Through Let’s Talk we are contributing to an environment where it’s easier to talk about mental health.
Can you tell us a story about an individual who was impacted or helped by your cause?
There’s a young man with hemophilia in Nepal named Om Krishna who I interviewed for my documentary Bombardier Blood back in 2017. He was 19 at the time, and in the film he shows the camera how badly deformed his knees are as he shares the story of losing his five-year-old brother to hemophiliac bleeding only months prior. Om makes the point that access to medicine is the key difference between himself and American or European patients. For the past five years, Believe Limited has worked diligently and in partnership with leading global organizations to bring attention to the global disparity in hemophilia care, and to apply pressure on pharmaceutical companies to donate more treatment products to humanitarian programs serving developing countries, like Nepal. Believe Limited is by no means the sole reason for this, but there has been a steady increase in the amount of medicine donated to humanitarian programs in these past five years, and in 2019, Nepal received enough donated medicine that it saw its first adult male with hemophilia undergo knee replacement surgery. The surgery was a success, and now Om, 22, lives with less pain and more potential. There is much more advocacy to be done and a much greater balance to be struck, but Om’s story gives me hope.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
The United States is the only major country in the world that doesn’t guarantee healthcare to its citizens as a basic human right. As a result, the 10% of the population who lives with a rare disease like hemophilia, and even the 50% of the population who lives with a pre-existing condition are at constant risk. So one mega priority is protecting affordable healthcare for people with pre-existing conditions. Every American citizen should be entitled to the highest standard of medical care allowed by modern science, but in the meantime, we cannot jeopardize the healthcare coverage enabled by the Affordable Care Act (ACA); we cannot!
The second “wave a magic wand” request I would make is for people to prioritize curiosity over judgment and compassion over fear. I can’t tell you how many children and families face bullying, discrimination, and even unjust legal action related to a rare or chronic disease as a result of prejudice and fear. The psychological burden that many of these patients and families face is salt in the wound of already challenging circumstances. Be kind, be curious, or quiet.
The third ask I would make is actually really going to help you a lot, and that’s to be curious about your own health and wellness. Don’t brush past symptoms or ignore warning signs. Get timely checkups and follow-through on health action plans. Not only will you be doing a service to yourself and your family, but you never know when you’ll learn something that you’ll be motivated to share with someone else, which in health, can sometimes be the difference between life and death.
How do you define “Leadership”? Can you explain what you mean or give an example?
Leadership is doing the thing no one else can tell you to do; it’s believing in the path forward before it’s appeared and confidently helping people create it. It means not being afraid to speak the truth in a big room or to work hard in a small one. Leadership means being motivated to action by something that’s never been done before, in order to do something desperately needed. Leadership involves listening, learning, and knowing how to assess risk. Leadership is collaboration, consensus-building, and decision-making. Leadership is not letting the perfect become the enemy of the good, while also not letting the first idea outweigh the best idea. Leadership is how a mission becomes action and an aspiration becomes reality.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
“Success is a thing to be managed.” As a kid and young adult, I didn’t consciously realize this, but my concept of success was as a destination, of some sort; a place that successful people arrived to, somehow. Of course, this is absurd. Success is a current state of activity, in my book, and while the activity can be labeled for convenience as “positive” it nonetheless is work that requires management. There is no destination or room for complacency when it comes to success.
“There are no TKOs in life.” In my early 20s, I knew so many people who were too afraid or reluctant to do this or that for some reason or another, and while I appreciate the quality of a focused and timely craftsperson, are we all cranking out Mona Lisas on the daily or launching Google as our first foray into entrepreneurship? Of course not. Get curious about what holds you back, because if it’s simply that age-old fear of failure, learn how to push past it. Not doing so will forever limit your capabilities, whatever excuses you may use.
“First, get the one thing right.” I’m impatient and an ‘ideas guy,’ so adopting a mindset of ‘one thing at a time’ has been something of an acquired taste for me, and something I’ll be forever grateful to my co-founder Ryan for teaching me. Passion, vision, and excitability will absolutely be key to winning over stakeholders for your pursuit, however these cannot come at the expense of sound and deliberate tactical strategy. As the adage goes, big things have small beginnings. Set goals, prioritize, then do the first thing. Then the second, and with commitment, it’s incredible how momentous things can become.
“Everything in life is poker.” Okay, so lame quote, but take it from someone who played professionally for a time: poker’s full of life lessons. The one I come back to most is the importance of making full-decisions with partial-information. This is as mandatory in life as it is in poker, it’s just not quite as obvious how much information we really don’t have in life; poker’s more straightforward that way! Don’t let short term results — good or bad — impact long-term strategy. A variance in short-term results is a good reason to trigger reassessing an underlying strategy, but if the data and thinking informing the strategy remains sound, stick with it. Variance sucks, but what comes up must come down, just stay calm. Stick with what you know to be true, and emotionally, try to be results agnostic.
“Be kind, but don’t be a coward.” I’m a people pleaser with abandonment issues, so believe me, I don’t like pissing people off! Unfortunately, conflict is a part of life and avoiding it is neither kind, nor cute. When I’m afraid of conflict, it usually doesn’t so much matter the circumstances (one-on-one, big meeting, out-in-public), it’s usually because I’m not clear about my point of view. My lack of clarity has me feeling insecure and vulnerable, and these are not the qualities I want going into conflict! On the contrary, if a conflict is emerging, and I feel my head and/or heart starting to race, I try to ground myself back in goals: what am I trying to achieve here? Am I clear about my position? Am I making sure to listen enough? When I find myself reflecting on these types of questions, I find much greater peace and confidence.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
Wow, well for starters it would have to be a movement led by children. The most significant and urgent moments unfortunately seem to demand leadership from our children — Anne Frank, Ruby Bridges, Ryan White, Emma Gonzalez, Greta Thunberg. Then again, I don’t know if I could inspire a movement led by children; only a child can really do that; okay, so to answer this question, I’d work with best creative storytellers I could bring together to develop the World Family Campaign, a global movement to restore the family as the center of every modern society; above our economies and our governments and our militaries are our families. Imagine how that reprioritization would ripple across the globe, and for generations.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
You mean outside of “success is a thing to be managed” (wipes shoulder)? Well, I’ll take this through the lens of a creative… in theater school once, an instructor was working with an actor who was struggling to connect with their material. After a few rounds of rehearsals and notes the instructor finally said, almost under his breath, “There’s only so many ways I can say, ‘Show me your soul.’” It was a powerful moment, which of course, cracked the actor wide open. I’ve never forgotten that concept though, as an artist; if I’m to expect you to pay attention to whatever the heck it is I’m doing in that moment (as an actor, writer, painter, filmmaker, photographer, whatever), as an artist, it better have a piece of my damn soul in it, or else, there’s no point.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
Haha, I love this question, and yes, if I could have lunch with one person in the world it would be Gregg Popovich, the legendary head coach and general manager of the San Antonio Spurs. I’m an avid NBA fan, and I’ve heard enough of the stories about him to know what an incredible mind, perspective, commitment, work ethic, life story, and sense of humor he has. He seems to believe so whole-heartedly in his ethos that he moves without a care for perceptions. I really admire that.
How can our readers follow you on social media?
I’m most active on Twitter (@pjlynch), but you can also find me as Patrick James Lynch on Facebook, Instagram, and LinkedIn (shout out to all the committed LinkedIn users out there!)