I was reading the FB page today (if you haven't yet, you must join EHEcancer group if you have an interest in EHE) and two things occurred to me about the effort to find a cure for EHE or at least a solution to it clinical management. First, is the famous quote by Margaret Mead, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” It is the best description of our group imaginable. We might not always know where we're going or always agree with each other on the best means of achieving our goals, but we are certainly getting closer every day to taming the beast, thanks to the tireless efforts of our small, thoughtful, committed group. Those of us who've been involved with EHE for a while as well as the 'newbies' must all recognize the tremendous value of pooling efforts, and learning and working together that is made possible by the FB group. A fantastic example of this is provided by the story of Sue Byrnes who created the LAM foundation after her daughter was diagnosed with lymphangioleiomyomatosis, a rare lung disease that only afflicts females. Starting with a letter writing campaign she was able to leverage her friends' and family's support into a movement that essentially forced the NIH to fund research on LAM which has since led to major breakthroughs in our understanding and treatment of the disease. Her inspiring efforts could form a template we can use to advance our cause. I encourage you to learn more about her story and success since it has direct relevance to achieving our goals.
The second interesting point to me is that the main movers in the FB group are women. Very reminiscent of Sue Byrnes, the force behind the original EHE movement, HEARD, was Cynthia Pollak. She single-handedly did so much to move the field forward, including the establishment of the HEARD registry from which we learned so much about EHE - it still informs and guides the current efforts at creating an EHE registry. The current group, started by Dawn has seen other women, like Jane and Gayla take on major leadership roles. Almost all the posts each day on the FB page are made by women. So, in keeping with Margaret Mead's role as a cutting edge, prescient and consequential woman, the EHE group has embodied not only the credo exemplified by her famous quote but continues to show female leadership. More than a paean to women, I hope this spurs male readers to accept the challenge and try to do as much as the mom's, sisters and daughter are.