Rewriting the code. Restoring the future.

Three children looking up at a glowing diamond constellation

Rewrite SDS

Accelerating a cure for Shwachman-Diamond Syndrome

A focused effort to turn breakthrough gene-editing and stem-cell science into real hope — for our three children, Abigail (9), Dan (6), and Ben (2), and every child living with SDS.

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Our Story

A diagnosis — and a decision

A year ago, one genetic test changed everything. This is what we did next.

“All three of them.”

A year ago, a single genetic test changed everything — it named Shwachman-Diamond Syndrome in all three of our children. There is no approved cure.

“For the first time, a cure is within reach.”

Gene editing can now target SDS at its source. After decades of “monitor and wait,” a cure is no longer a fantasy — the only gap left is execution, funding, and speed.

Three children running free in a meadow at sunrise

“So we are not waiting.”

We started Rewrite SDS to fund speed — to bring that cure to Abigail (9), Dan (6), and Ben (2), and every child living with SDS.

The Genetic Puzzle

Understanding SDS

Shwachman-Diamond Syndrome is a rare, inherited genetic disorder caused by a change in the SBDS gene. It affects several systems of the body at once — and today, no approved therapy corrects the disease itself.

Bone Marrow Failure

The marrow struggles to produce enough healthy blood cells.

Infection Risk

Low white-cell counts leave children far more vulnerable to infection.

Growth Challenges

Many children are small for their age and grow more slowly.

Digestive Issues

The pancreas often can’t release the enzymes needed to absorb food.

Leukemia & MDS Risk

SDS carries a serious lifelong risk of blood cancer.

Lifelong Monitoring

Constant blood tests, bone-marrow checks, and dozens of specialists.

The Bigger Picture

Rare disease, real stakes

SDS sits inside a vast, underfunded frontier — where science has finally caught up to the need.

~95%

of rare diseases have no FDA-approved treatment.

Zero

approved therapies that correct SDS itself, today.

~50%

of people with SDS develop a blood cancer (MDS or leukemia) by age 50.

Blood-cancer figure: myeloid malignancy in SDS, international cohort · Blood (2025).

Pioneering Progress

Our focus: science aimed at the root cause

We direct support toward the highest-leverage work that shortens the path from discovery to treatment for SDS:

Gene editing & stem-cell therapy — correcting the genetic change behind SDS in a child’s own blood stem cells.
Translational science — moving promising discoveries from the lab toward clinical readiness.
Speed to the clinic — backing the steps that shorten the path from a working idea to a treatment children can receive.

We support promising, credible science aimed at the root cause. We do not present any single program as guaranteed — our role is to help the best work move faster.

How We Work

Focused. Direct. Fast.

Many organizations support the broader SDS field. Our role is narrower: to help accelerate the most promising cure-directed work — and to back it directly.

We concentrate

Rather than spread support thinly across the field, we focus everything behind the most promising root-cause approach to curing SDS.

We fund directly

Directed, milestone-based grants to the specific program doing the work — so dollars reach the bench, not general overhead.

We move fast

Small and family-led, we can decide quickly and take a focused, well-judged risk that a larger body can’t.

Our first focus is a leading gene-correction program aiming to correct SDS at its source — supported through a direct, milestone-based grant so that funding moves quickly to the work that matters most.

Join the Mission

Let’s do this together

The science is becoming actionable, and how fast we get there now depends on partnership.

Fund

Support research and translational programs advancing treatments and a cure for SDS.

Get in touch →

Build

Contribute expertise in science, medicine, biotech, fundraising, operations, or communications.

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Connect

Introduce researchers, foundations, philanthropists, and partners who can accelerate progress.

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Let’s Talk

Help accelerate a cure

Whether your support is a gift, an introduction, or your expertise, you become part of a community working toward a future where SDS no longer defines a child’s life.

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