Firstly it is usually a good sign selfishly when I write about a topic broader than my choking, falling etc – it means I am actually in a good place and I feel pretty strong this morning – so thanks to Him above and the sleeping pill for that.
I have wanted to raise my voice on this issue many times and hope it is taken the right way as the voice of one patient who sees only a fraction of the picture, but a voice that is important nonetheless. I hope no one takes offense at what I have to say – but I feel it must be said.
Progressive Supranuclear Palsy (PSP) is a disease people don’t talk about. There are few advocates for it. By the time most patients receive a diagnosis, they are already in the advanced stages of the disease and unable to advocate for themselves and their special caregivers, overwhelmed and emotionally drained, often lack the resources and energy to raise awareness.
Cures Collective
This reality was brought home to me by a LinkedIn post from the inspiring PD Warrior Larry Gifford, who shared news about ‘Cures Collective’—a new organization with a powerful mission.
According to their mission:
“1 in 4 people are likely to be diagnosed with a neurodegenerative disease, such as ALS, FTD, Parkinson’s, MS, Huntington’s, Alzheimer’s and more.
While researchers recognize the deep interconnections among neurodegenerative diseases, efforts to understand and combat them remain fragmented—divided by silos in research, funding, care, and policy.
There is no unified strategy, no comprehensive coordination that bridges science, clinical care, public awareness, and legislative action.
Opportunities for collaboration among key stakeholders—researchers, clinicians, industry leaders, patients, and policymakers—are scarce.
With neurodegenerative diseases projected to become the second leading cause of death globally by 2040, the time for fragmented approaches is over.
We must act now—together—with urgency and cohesion.”
It goes on to say:
Steering Committee
The initiative announced its initial Steering Committee, which includes representatives from various disease areas such as ALS, FTD, MS, Huntington’s, Parkinson’s, and Alzheimer’s.
Current members include:
– Hummingbird Fund
– Huntington’s Disease Youth Organization
– Les Turner ALS Foundation
– PD Avengers
– I AM ALS
– CureGRN
– Hop On A Cure
– Dr. Jinsy Andrews
– Jenny Fortner
We are deeply grateful to Sharon Hall, a former member of the inaugural steering committee and a vital FTD advocate.
PSP Representation
While I wholeheartedly support the initiative, I couldn’t help but notice that PSP is simply not mentioned—it falls under the ambiguous ‘more’ category and lacks representation on the Steering Committee. Whilst one PSP charity is listed in the 50 that are taking part, it seems an afterthought (despite PSP having more prevalence than many of the other conditions including ALS and some of the others).
This isn’t about prioritizing PSP over other conditions like Alzheimer’s or ALS – Heaven Forbid. It’s about acknowledging that PSP remains underrepresented and misunderstood. Why?
The Vicious Cycle
PSP is misdiagnosed in over 60% of cases for years (see article – Misdiagnosis – The Emotional Cost Biomarkers Could Spare
). By the time a correct diagnosis is made, patients are often too advanced in the disease to advocate or participate in trials.
Doctors, from my vantage, hesitate to diagnose PSP early due to the lack of definitive tests, treatments, and knowledge. As a result, the disease progresses unnoticed, and opportunities for early intervention are lost. I suppose if I was a doctor I would want to be certain before telling someone they had PSP.
This leads to a vicious cycle: no treatment because there’s no voice, no audience, no market, and little advocacy, so the situation won’t change.
Unsung Heroes
I’ve written previously about the incredible PSP community (see: PSP: Unsung Champions). The disease often strikes late, leading to a whirlwind of life changes – for me in the first 6 months that has included retiring, losing mobility, choking, falling, home renovations, and navigating unprepared healthcare systems.
Soon after diagnosis, patients start what is a relatively fast journey to becoming withdrawn due to the combination of dementia and advanced Parkinsonian symptoms.
As I wrote last week, the one famous celebrity who had PSP – started advocating in 1999 in an ABC documentary – but he had been fitted with a feeding tube by 2001 and passed away in 2002.
Does the Medical Community Care?
In my country, there isn’t a single PSP support group that I know of. I’ve tried raising funds for a hospital to start one, but it’s been challenging, because to be honest many people (except those loyal to me) don’t see the purpose of investing in a charity that has so little treatment. Advocacy and frankly hope.
When I was diagnosed, there was no support, no materials, and little knowledge among doctors. One even told me, ‘What does it matter, there is no treatment for it anyway.’
Perhaps most telling is that despite my blog being viewed 96,000 times by 54,000 visitors, and many many patients, caregivers, friends and connections reaching out – not one medical professional has reached out to me in a professional capacity about PSP. Not one to discuss the experience or share ideas. That speaks volumes.
Why It Matters
This cycle of silence keeps PSP in the shadows. Patients and caregivers continue to suffer quietly. As someone used to driving change, it’s hard to accept that I may not be able to move the needle. But I will keep trying. I am far too stubborn but plenty of people will say I am wasting my time.
Positives
The PSP community is truly dedicated, though small and often overwhelmed and, in the strangest way possible,, proud to be a member.
I’m encouraged by the growing collaboration across brain conditions and the advocacy of figures like Michael J. Fox. It is making a difference and given the links between PSP, Parkinson’s, and Alzheimer’s (e.g., TAU protein), I believe science will eventually find a way to diagnose and treat PSP earlier. It will not be in my time probably but hopefully for the patients of the future.
I hope that my efforts to raise awareness contribute, even in a small way, to the advocacy and understanding of this devastating disease. I hope others raise their voice and I thank the charities and NGOs like Cure PSP and PSPA who are working tirelessly on our behalf.
