Today is Martin Luther King Day, and here’s one of his best quotes, from 1968:
“We must accept finite disappointment, but never lose infinite hope.”
Fast-forward to the 1980s, early in my career as a neurologist mostly for patients with incurable movement disorders. I rapidly learned that besides objective diagnosis and treatment, my agenda at patient visits should include an old-fashioned pep talk along with an update on research. Now, I had grown up in a culture where such “touchy-feely,” subjective things were far subservient to scientific thinking, and my medical education was no different. So, once I was out in the real world of patient care, it was kind of a revelation to discover that a simple, subjective appeal to hope could sometimes alleviate more suffering than any medication, therapy or surgery I could prescribe.
Fast-forward again to 2004, at which point I had been CurePSP’s Clinical and Scientific Director for 14 years, and a new CEO named Richard Zyne arrived. He was an ordained minister who spent his career mostly with non-sectarian, non-profit organizations. As a clergyman, he well knew the value of hope in helping people deal with adversity, and he quickly made “Because Hope Matters” CurePSP’s tagline.
I’ll admit I was skeptical at first. I thought that providing hope was the doctor’s job at an individualized, “retail” level in the exam room and that CurePSP should support research, educate patients and clinicians, and help find ways to bring the best available care to all who need it. But working with CurePSP showed me the value of a national organization with multiple communication platforms in reassuring patients and families that scientific understanding of PSP is advancing, that similar diseases are slowly yielding to new treatment, that more researchers and journal articles are devoted to PSP than ever, and that a well-run non-profit organization is in their corner. In other words, I again discovered that hope matters, but now at a more “wholesale” level.
The idea for this blog post entered my mind from the proximity of MLK Day and my post from four days ago, where I reported the failure of one PSP drug candidate but offered hope for five others currently in clinical trials. In fact, regular readers of this blog know that I try to infuse hope into every post rather than merely reporting the news objectively. For the ability to understand the value in that, I thank my patients, Richard Zyne – and Dr. King.
PSP Blog 
Thx Dr Golbe for sharing. The dear ones of people suffering are eagerly looking for any such miracle drug. It’s hard to digest that in today’s world there is comparatively little investment in life saving drugs for rare diseases.
Dear Abhayratnaparkhi:
As someone who has spent decades doing research in rare diseases, I know exactly what you mean. But most of the cost of developing new drugs is paid by drug companies, and their ability to make a profit from drugs for rare diseases was greatly improved in by orphan drug laws starting in 1983 in the US and more recently in the UK, EU, Japan and elsewhere. Such laws typically provide a longer patent life and certain tax advantages for drugs for rare diseases. PSP also benefits from its resemblance at the cellular level to Alzheimer’s disease, where the huge profit potential has prompted equally huge investments by drug companies. All of the drugs being developed for PSP are intended for (eventual) use in Alzheimer’s as well. The problem in developing drugs for PSP isn’t lack of financial resources — it’s that the disease is so complicated at the molecular and cellular level.
Dr. Golbe
Thank you Dr. Globe for the insights.
Dr. Golbe, My husband (who has PSP) and I are deeply grateful to you for your dedication to both scientific research and to helping to keep our hopes alive. Staying hopeful about the possibility of a viable treatment motivates my husband every day to stay as healthy and strong as possible. The grounded optimism that you convey in all of your communications is profoundly powerful and makes a real difference in our (and I suspect many other) lives. Thank you.
Dr. Golbe, As a son of a PSP patient (my father), reading and translating your blog to my father and mother is one of my weekly routine, especially there is almost no such information avaliable in Chinese. We really thank you for your effort and time spending on each paper.
Glad to help. CurePSP is working on having their informational materials translated into multiple languages, including, I believe, Mandarin. Check curepsp.org for details.