Hope Amidst Trials…or more correctly ‘No Trials’

I’m incredibly fortunate and grateful in most areas of life, and I count my blessings and thank G-d more than daily. But in one critical respect, living in Israel has proven selfishly hard and I felt it especially this week. Yet I still hope, in a very pro-active sense.

As Rabbi Jonathan Sacks once wrote:
“Optimism is the belief that things will get better. Hope is the belief that, together, we can make things better.”

That distinction has never felt more real to me. I’m trying to shift the needle—for myself and for others—but it’s not easy.

Every day, people tell me to have hope. They say science and technology are advancing, that cancer is being cured, that the genome is being decoded. But I can’t get into a promising clinical trial. Why? Because I live in Israel. This isn’t about politics or prejudice. This is on us—real priorities and the size of our population.

I have a very rare disease. Ironically, that’s not so rare (see this blog on rare diseases I wrote, which highlights the fact that 300 million people worldwide have such a thing). Many people live with conditions that don’t fit into neat diagnostic boxes. Mine is PSP—Progressive Supranuclear Palsy—a particularly aggressive and deadly form. It’s not well-known, and people avoid looking at the statistics, often for good reason. But the reality is: it kills, and it kills relatively quickly in the vast majority of cases.

The other day, my wife and I felt more alone than usual. I had just received information about a promising clinical trial for PSP. It’s running in the US, UK, France, Italy, and other countries. For a moment, I was hopeful. I reviewed the criteria with my neurologist, who confirmed I qualified and that he would support my application. Yes, 50% of participants receive a placebo—but that’s how trials work.

I contacted several countries. I even spoke with the project manager of the UK trial. But I was told, “Residents only.” The same is true elsewhere.

Israel has no clinical trials for PSP. That means I have no access to this potential treatment—unless I move back to the UK. But I won’t. My life, my family, my heart are here. And time is not on my side. I want to live life here and make a change here.

When I was diagnosed with PSP three months ago (initially “likely PSP,” now “clearly PSP”), I began working on something that might help others in the future. In memory of my late neurologist, Professor Nir Giladi, I’ve been collaborating with Tel Aviv Medical Center to explore how we might begin laying the groundwork for clinical trials here in Israel.

Thanks to the extraordinary generosity of friends, family, and a few kind strangers, over $20,000 has already been raised and pledged. These funds are now being carefully planned for use in partnership with the hospital. It’s a start—one I’m deeply grateful for—and I want to thank everyone who has contributed, supported, or simply reached out. Your kindness means more than I can say and it will be wisely used.

It’s comforting when people say, “Stay positive,” or “Science is coming.” But in a small country, at war, with many competing health priorities (I know—I have a son in the IDF and friends with serious conditions), there just isn’t enough funding to go around.

And I get it. I truly do. But it still counts against me. And the clock is ticking.

Six months ago, I was running 5–10 km regularly. Three months ago, I was walking 5 km. Now, I can barely manage 200 meters with a walker. That’s PSP, gaining ground.

I’m an optimist—and crucially, as Rabbi Sacks said (and truly exemplified), I have hope. I’m pushing hard. There are plans in motion, ideas being shaped, and conversations happening. I will do everything I can—for the PSP community in Israel, and yes, for myself.

It’s just hard to accept that in the Start-Up Nation, a land of brilliant minds and big hearts, having a rare disease doesn’t help much.

Still, necessity drives innovation. So I’ll keep pushing. And if you have ideas that can help me, feel free to reach out—I’m a Brit by background, so I don’t like asking 🙂 but I’m sure going to push. And if you would like to donate ahead of my soon-to-happen push, please do so here. Thank you—and as a Brit, I apologize for asking, and I really mean it.