I attended my first National Hemophilia Foundation (NHF) Annual Meeting in November of 2011 in Chicago (FYI also the 2017 host city). It was an unforgettable experience of community-engagement and education. Social events enabled me, as someone who's primary connection to the community was online, to connect in person for the first time while the symposiums and breakout sessions provided me bleeding disorders education unlike anything I'd experienced before. I knew immediately that Annual Meeting was going to become a staple in my yearly calendar.
During that meeting four-and-a-half years ago, I can also recall discussion of how Annual Meeting was going to be creeping up in the calendar over the ensuing few years in preparation for a landmark gathering in July of 2016: back-to-back NHF's Annual Meeting & World Federation of Hemophilia's (WFH) bi-annual World Congress. Taking place over the course of 10ish days, the combined conferences were anticipated to be the largest gathering ever of people with bleeding disorders.
On one hand, that might sound kinda corny- a giant group of people with bleeding disorders? So what? Why is that important?- but when you consider things like:
- On the heels of the blood contamination crisis, we are now living in the era that will see the first generation of people with severe bleeding disorders enjoy an average life-expectancy.
- Potentially breakthrough biotech developments have created a possible future with exciting, radical changes to treatment options for people with hemophilia.
- There is booming awareness, activism, and organization for women with bleeding disorders, people with von Willebrand Disease, and people with extremely rare factor deficiencies.
- The 10-fold expansion of WFH's Humanitarian Aid Program (HAP) over the last three years (in 2013 HAP donated approximately 10,000,000 international units (IUs) of factor. In 2016, it's up to 112,000,000 IUs) has enabled rapid expansion of the most robust program in the world serving people with bleeding disorders in developing countries.
Given these considerations and many more, July 2016 had been highlighted in my calendar for some time. Little did I know four-and-a-half years ago, however, that Believe Limited's role during this landmark gathering was going to be a profound one, with numerous programming and video production responsibilities.
The Impact Awards
Held following Annual Meeting's Opening Session, the second annual Impact Awards presented by Baxalta (Now A Part Of Shire) and hosted by Believe Limited recognized 43 teens affected by bleeding disorders for their positive impact in one of five categories: Academics, Arts, Health & Wellness, Service & Volunteerism, and Athletics.
Five excellent members of NHF's National Youth Leadership Institute (NYLI) joined co-host Seth Kirschner and I onstage to read the bios of the honorees recognized in each category. Just as I was last year, I was struck by how impressive and inspiring the young people in our community are, and by the enthusiastic support of so many parents, caregivers, and leaders who ensured that these honorees were recognized with gusto!
Our interstitials (the skits and videos between honoree recognitions) were all built around this idea that Seth & I were attempting to raise $109,000,000 to start our own theme park for the bleeding disorders community: Impact World! I'm pleased to say that our wacky idea for infusing (pun alert!) the night with comedy and creating a true awards show environment for our honorees to be empowered by was a success!
The Impact Awards were filmed, so barring any unforeseen challenges, video from the event should be made available in the near future. Congratulations to the 2016 honorees for this well deserved recognition! It was an uplifting way to kick off Annual Meeting!
Sponsored by National Cornerstone Healthcare Services (NCHS) and produced by Believe, Powering Through is a nationwide, conversational speaker series in which we bring together inspiring individuals from both within the bleeding disorders community and from outside of it to discuss the obstacles and challenges we all face in the pursuit of becoming our best selves.
We've held these events all around the country, but this was our first time at Annual Meeting! NYLI's Greta Hayden-Pless and Gateway Hemophilia Association's Austin Hanse represented the bleeding disorders community, and TV/Broadway actress Ali Stroker- the first performer on Broadway to use a wheelchair- participated as our special guest.
Nine-thirty in the morning a few days into a super busy conference can be a challenging time to get a strong turnout for an event, especially when a trek over-the-river-and-through-the-woods is necessary to find the room! Fortunately, despite these considerations, we had a packed house of energized attendees and the session was superb! Our conversation went in many interesting, inspiring, heartbreaking, and comical directions led by the open sharing of our three excellent panelists. And while there were many in the room attending Powering Through for the first time, there were also a notable number of returning attendees- always a great sign for a program.
I continue to take so much pride in producing these conversations for our community, and I'm thankful that we have recorded every single one so that whether you are in the room or not, everyone has the opportunity to engage the material. Check out video from previous conversations (and soon, from this one as well) at PoweringThrough.org. A huge thank you to NCHS for continuing to be a supportive, thoughtful partner in the ongoing development of this program, and to NHF for including Powering Through in Annual Meeting's agenda this year!
Believe always films the sessions that we host, so seeing us walking around with cameras and sound equipment is nothing new, but this year our video production responsibilities expanded as we produced content for Annual Meeting's Opening Session and Awards Ceremony and were hired by WFH to be the official videographer of World Congress!
In practice, this meant that throughout both conferences, we had 1-2 (and on occasion, 3) production teams spread out to record various sessions, interviews, and events. Additionally, I'm quite proud to point out that video Believe produced in Senegal last fall for WFH's HAP was also shown in front of an audience of thousands during the Opening Session to World Congress.
How all this content is going to be packaged and distributed remains to be seen (though some has already been released through WFH's social channels). Keep an eye on WFH's & Believe's social channels for updates.
My Most Important Speech To Date.
Several months back, WFH asked if I would be interested in being one of the plenary speakers at World Congress. Given my experience with public speaking, my passion for WFH's work, and the incredible opportunity to speak to international leaders and activists in our community, I didn't give it a moment's thought before saying, "Yes absolutely I would love to thank you!"
To be honest, though I think about this community and my mission constantly, I didn't give the construction of this particular speech much thought until World Congress actually began. And as days went by and other responsibilities were checked off the list, I started to dig deeper on exactly what point I wanted to make, and how I wanted to make it. I kept coming back to this driving thought:
In a room full of hundreds of doctors, pharmacists, nurses, psychologists, foundation directors, and other impressive community members from all corners of the Earth, what do I have to offer that is uniquely valuable and therefore worthy of this incredible audience's time during this precious, rare gathering?
I'm not a big "notes guy," so most of my speeches are in a very minimal outline form, though given the importance of this particular opportunity, I scripted my closing remarks precisely. WFH does have video from this that I look forward to sharing when it's released, but in the meantime, here is a selection from my closing remarks that speak to the heart of how I now think about self-care:
My journey and understanding of self-care, like many of yours I’m sure, has evolved. I no longer consider it simply self-infusing, stretching and strengthening, and the maintaining a well-rounded diet. Nor is it enough to understand trough levels, insurance policies, and legal rights. For me, self-care is now the unique application of my gifts and skills for the betterment of this community. I am compelled to do the work I do, in the memory of my brother, in order to make sense of losing him. In order to manage the pain of losing him. In order to understand my place in the world. More than utility, that is empowerment, and that is now my baseline for self-care.
I have every intention of continuing my self-care practice that now includes creating meaningful content and experiences for and about people with bleeding disorders. But I acknowledge that I have the luxury of a privileged definition of self-care, a luxury not shared by approximately 75% of hemophiliacs around the world.
The privileged amongst us, most of whom enjoy this privilege by the random fortune of birth location, we belong to healthcare systems from which we benefit greatly. Yes, there are challenges, but on the whole and by comparison, we are very fortunate. This privilege, in my opinion, comes with a responsibility to participate meaningfully in this system. To my fellow patients from the developed world, and particularly those from the United States, I implore you to speak to the reps from the pharmaceutical manufacturer who’s product you use- or go online and educate yourself- learn about the Corporate Social Responsibility of your company. Learn what their position and activity in the developing world is, and urge them to do more. Speak to leadership at your local hemophilia patient organization about potentially twinning with an emerging national member organization. Speak to philanthropists or people in positions of great influence about your condition, and your international community. Encourage financial donations so that WFH can afford the increased shipping costs, training costs, and diagnostic costs that are vital to creating sustainable and predictable care for our international brothers and sisters.
I am young, but I am neither naive nor uniformed. This is hard work. It will take a long time. But in this room, this very room right now, sits leadership with unique expertise and capabilities from all around the world. Realizing a vision of treatment for all necessitates international leadership in the bleeding disorders community prioritizes this vision, and refuses to allow our privilege, local challenges, or other factors to derail that focus.
Our global community is dependent upon us. Let’s continue to ramp up the efforts for our brothers and sisters who are most in need so that one day, they too may enjoy the luxury of a privileged definition of self-care. Thank you.
I've always found it effective to speak from the courage of my convictions with both precise articulation and real human emotion, and this experience was no different as evidenced by the couple dozen people who lined up afterwards to speak with me about the address. People from Egypt, Australia, Korea, Brazil, France, Denmark, and on and on. I didn't anticipate this. I stayed present and attentive to each person who approached, but when that ended and I had a moment to reflect, I was floored. How, on Earth, did I get here, did Believe get here? And, more importantly, with this level of interest in my mission, what do we do next?
At a Question & Answer I hosted later that afternoon, there was an opportunity to engage a bit deeper on the topic of how content specifically has the power to influence hearts and minds, and how I believe we can increase the use of content for these purposes with regards to improving the overall quality of life for the international bleeding disorders community. I'm excited to say I had some intriguing conversations with many likeminded people and look forward to where conversations about this topic go from here.
So what do we do next? Where do conversations go from here?
In addition to what I've recapped above, the joint conferences also consisted of numerous coffeeshop conversations, dinner meetings, and spontaneous spitballing sessions, as well as my attendance at numerous breakout sessions on a wide range of topics, all of which rounded out an incredibly powerful and momentous two-week experience in Orlando.
It's tempting to bask in the energy and stimulation of all this and feel accomplished, and on one hand, that's completely fair- Believe Limited did an incredible amount of work in preparation for and during these two meetings, and the feedback from our efforts has been strong; credit where credit is due!
On the other hand, those living in the developing world don't benefit from our sitting back and relishing our accomplishments. Women with bleeding disorders can't make strides in their awareness and advocacy efforts if activists and allies feel as though the work is over and grow complacent. And patients within the plentiful US need guidance to help navigate a rapidly evolving product market within a complex healthcare system.
The combined Annual Meeting & World Congress extravaganza of 2016 has been anticipated by many of us for years, and now, it's over. Let's use some down time this August to reflect and recharge, then let's make sure that the energy, connections, and momentum created this summer carries into our work this fall. Let's use the inspiration of such incredible meetings to motivate us to work harder and with even greater focus on addressing unmet needs and improving care. Treatment For All is possible, in ever sense of the phrase if we continue to work hard and work together on making that aspiration a reality.
About the Author
Patrick James Lynch is the CEO and Co-Founder of the award winning digital content agency Believe Limited. He is the 2013 Recipient of HFA’s Terry Lamb Award & the 2014 Recipient of NHF’s Loras Goedken Award. Patrick lives with severe hemophilia A dedicates his work to the memory of his little brother Adam. @pjlynch.