More Grandmas, Please

During a rare but treasured family gathering over a holiday weekend, we found the perfect time to announce my first pregnancy. It was a thrill to share our joyful news, and my parents couldn’t wait to be called Grandma and Grandpa. But a strange sense of dread threaded through our home: my mother, always full of energy and sparkle, was not herself.

She had been uncharacteristically low energy all summer. Then in September, tiny pin pricks of broken capillaries started appearing all over her arms. She sat with me in my grandma’s breakfast nook with damp eyes as she shared a prayer she felt God had given her for reasons unknown. It was a prayer for an unidentified friend to leave a legacy of faith for her children, provide solace to her mourning family, store up treasure in heaven, and ultimately die well.

She tearfully wondered if the prayer was for herself.

Within a month, bruises started appearing all over her body. So large, in fact, that the hematologist declared the bruise stretching from her ankle to her waist to be the largest he’d ever seen in his career. As her body broke down further, excruciating internal bleeding sent her repeatedly to the hospital. The pain of unmedicated labor, she told me, was nothing compared to what this unknown disease was inflicting on her.

But even in the darkest valley, she maintained her joy.

Finally, after endless pokes and vials of blood, she had a diagnosis: AL amyloidosis. This rare disease, which replaces functioning proteins with amyloid proteins, strikes only about ten in every million people.¹ Ten out of a million sounds small, but every one of them could be called Grandma by someone. In most people, amyloidosis attacks the heart; for my mother, it was her liver. For the ~50% of patients diagnosed in stage 3 or 4, it’s deadly: median survival rates are around a year.²

Only a few months after she shared her words with me, a freak accident caused a liver bleed that couldn’t be stopped, and she passed away within days. It was both a tragedy and a mercy to lose her so fast, well before I had a baby in my arms. She was out of her suffering, and she had indeed died well, but that baby would never meet Grandma earthside.

But investing can help save other grandmas from their stories ending this way. Fast forward to the present and one of the many biotech companies that Eventide has invested in is pursuing a promising new future for amyloidosis patients. Under current standards, more than 30% of patients do not sufficiently respond to first-line treatment³; the second line of defense, at that point, has a 10% rate of response at best.^4,5 The latest data from this company’s phase 3 trial in refractory amyloidosis patients showed complete remission in 75% of the population with the potential of hitting even higher rates with additional research, a huge leap forward in efficacy.⁶ That could extend the life of three in a million grandmas. Imagine how many happy babies that could make! The data is unequivocal: more grandmas, please.

With a limited patient population, many healthcare investors are not looking for small-cap companies delving into such low-occurrence disease therapeutics. At Eventide, we believe that for the people that it touches, it’s not a small percentage, it’s an entire life. Every investment counts in bringing these therapeutics from ideation to the clinical trial process to final FDA approval.

My mother now has 16 grandchildren who all wish they knew her. While still with us, she was only given a prayer. But other grandmas with the same diagnosis of AL amyloidosis might soon receive medicine and hopefully a very different kind of prayer, for life and not for death.

May we not belittle the value of our investments and just how far they can go, truly turning treasures on earth into treasures in heaven as we seek to love our neighbor with what we have been gifted, whether it be a prayer, or a hug, or a talent, or a few dollars that can’t fly heavenward but can bless our fellow man.