by Susan Sherman, CEO
Recently, I attended an awards dinner hosted by the National Disease Research Interchange (NDRI). The keynote speaker was Dr. Francis Collins, Director of the National Institutes of Health (NIH). In his acceptance remarks, he addressed an audience comprised of healthcare professionals, scientists, patient organizations and academicians, all working together to address complex rare diseases. He said, “Where there is no action, there is no hope.” He went on to say that hope requires responsibility.
His comments led me to reflect on our tagline, A Breath of Hope, and the role of rare disease patient organizations as leaders of action and hope. We know that families who receive an unexpected rare disease diagnosis face unknown futures that are nearly always uncertain, frustrating, financially taxing, emotionally draining and lonely. Their desperation to find answers for themselves or their loved ones drives them to take all kinds action, like asking questions, finding other patients, educating care teams, raising awareness and much more. These actions generate a sense of understanding and the hope of progress.
Hope and progress instill a sense of responsibility and it’s something we see frequently within the LAM community. We see families and friends sharing knowledge, volunteering, participating in research and expressing compassion and joy for shared experiences. Every day, we witness warmth and caring along with a sincere willingness to ‘take on’ the responsibility of moving things forward, providing a shoulder, making a difference and building upon progress. Just when we think that we must have tapped the last ounce of effort and attention for helping women with LAM, we discover that the generous well of human spirit is even deeper than we had imagined.
Enter, the Patient Benefit Conference, or, as I’m now describing it, HOPE 2.0.
This conference came to life last November in Los Angeles after three years of imagining and planning. Since joining The LAM Foundation in 2013, I have led the production of six research conferences and LAMposiums. Those of you who know me, know that I like to worry, and it is particularly true about our signature events.
With each consecutive conference, I worry that the programming will not meet expectations, that attendance will decline or that we will fail to keep our incredible scientific and community momentum. Looking back, not only did we achieve these goals at our events in 2017, we created a new type of conference experience.
I can only explain it by using the equation of hope + responsibility. The Patient Benefit Conference offered a unique experience where members of the LAM community took on new responsibilities, displaying courage and unleashing their curiosity. The result was a tsunami of new HOPE, or HOPE 2.0, for progress and better lives for everyone living with LAM.
Examples of new responsibilities included LAM patients leading the keynote session, telling their stories and, most importantly, posing their questions to an audience of thought leaders. Family members and patients assumed responsibility for joining physicians and professionals in designing solutions for the most vexing issues facing LAM patients every day. LAM patients and Clinic Directors were responsible for setting the agenda that highlighted the Six Big Topics posed at the meeting and, of particular note, a LAM patient was responsible for delivering a true rock star, dazzling us with vocal stamina reminiscent of Robert Plant and psychedelic sixties. For me, I struggled with the new role of faithful observer, watching unscripted workshops reveal a treasure of ideas and momentum. The closing plenary bubbled with a Price is Right gameshow intensity, no one quite sure what would happen, who would be at the microphone or, whose idea would win. It was truly frightening and outstanding.
The HOPE component of this will be harder to describe. There was something special about the courage it took for people to take on new roles, to walk into workshops without a speaker or a script and to participate by sharing what they were expert at: being a doctor, a patient, a spouse, a scientist, an innovator. Every voice made a difference. With each idea, conversation and post-it note, we saw the energy build, possibility morphing to probability, problems into solutions and enthusiasm into real, hard cash. At the Breath of Hope Gala, $200,000 was raised to support the solutions developed during the conference.
As I write this, 14 initial proposals, based on ideas generated at the Patient Benefit Conference, have been received at the Foundation for consideration for funding. The proposals offer next steps for improving every-day wellness and supplemental oxygen delivery, finding new biomarkers to help us understand disease phenotypes and progression, providing better exercise guidelines and addressing the nature of fatigue in LAM. Scientists, clinicians and patients have come together to solve patient problems in the short term. We did it by taking on new responsibilities, taking bolder action and redefining HOPE.
Please read this summary of the Patient Benefit Conference. Stay engaged and energized, offer input to our teams and share your stories and insights. You may have the next idea or question that will improve the lives of women with LAM in five years or less.
Read the Patient Benefit Conference Executive Summary.