My mother never really liked the word ‘hope.’ “Hope feels empty,” she said one day early in my sister’s fight against Batten disease. “Hope is waiting for someone else to make your life better.”
Instead, we built our mantra on the word ‘believe’ — which sounds a lot like ‘hope’ but really isn’t the same thing at all. And for 10 years, our belief drove us in our relentless effort to beat the rare brain disease killing Taylor. Viewed one way, it worked: we championed many research initiatives, including a novel gene therapy approach that sick kids could receive in a clinical trial starting in 2018. We could quit now knowing we achieved our original goal — produce a potentially lifesaving treatment for infantile Batten disease.
But there is a next chapter to Taylor’s Tale. That’s the message we shared at an event this month celebrating our 10th anniversary and the friends and donors who support our work. And that night, as I listened to our keynote speaker, Dr. David Fajgenbaum, I thought about the role hope will play in the coming days and months and years.
David knows a little something about hope. Once a star athlete known to his friends as the Beast, he was diagnosed with a deadly illness called Castleman disease during medical school in 2010. He’s alive today because of his single-minded mission to take on his own disease.
Despite Mom’s initial disdain for the word, hope is crucial in the fight to save people like David and my sister, Taylor. Hope is necessary to overcome any kind of struggle, no matter the severity or scale.
But hope alone is not enough.
If you really want to turn tragedy into opportunity, do these six things:
- Have hope. Hopelessness sounds the death knell for any battle, no matter the circumstances. If you don’t have hope, you won’t succeed. It’s that simple.
- When hope is not enough, turn hope into action. When the stakes are high and the road leads uphill, hope isn’t enough. Hope is easy. Acting on hope takes more effort. You can wait for something good to happen. You might even get lucky — the first time. But the good won’t last. If you want to create real, tangible, measurable change, you have to act on that hope. You have to do something.
- Be willing to make sacrifices. If you want to win the toughest battles, you have to be willing to make sacrifices — whether those sacrifices take the shape of time, money, or other interests or goals. You won’t create the kind of change you want to see on 50 percent effort.
- Play through overtime. In his keynote address, David talked about the multiple relapses of his disease since 2010. Each time, he came close to death, even receiving his last rites. But each time, he bounced back. David came to see his life after these relapses as overtime periods, which only fueled his passion to find a treatment for Castleman disease. And, he argues, we’re all in overtime, because tomorrow is never a guarantee. Approach every day like you’re playing through overtime, because every day is a gift.
- Stay positive. This is something I’ve personally struggled to do in the 10 years since my sister’s Batten disease diagnosis. It’s hard to have a positive outlook when it feels like the world is crashing down all around you. But I’ve realized life is a lot more pleasant when I focus on the aspects of my life that are good. And that gives me the strength to fight all the stuff that’s bad.
- Believe in possible. Doctors didn’t think David would survive Castleman disease. And people questioned the likelihood that a tiny, all-volunteer team could tackle Batten disease — a monster that eluded science and medicine for more than 100 years. Norwegian explorer, scientist and politician Fridtjof Nansen once said, “The difficult is what takes a little time; the impossible is what takes a little longer.” Today David is in his fifth overtime —at 45.45 months, his longest remission since 2010. And Taylor’s Tale needed 10 years to accomplish what most saw as a stretch goal that bordered on impossibility.
It didn’t take long for Mom to warm up to hope. Today, she likes to say that hope comes in different boxes — different shapes and sizes, but always a gift. And while the change Taylor’s Tale helped create came too late for Taylor, the hope is real. Real treatments for real people, coming to life at a rapid pace. And yet, our work is far from done.
In the coming days and weeks, we’ll share more details about a central theme of our next chapter — the development of a care management plan to address the needs of patients suffering from infantile Batten disease right now. This plan will provide a lifeline for desperately ill children and their families. I’m excited to bring more big and worthy ideas to reality, and I hope you’ll join us for the ride.