How to Fundraise for Shwachman-Diamond Syndrome Research: A Free Guide for Families and Supporters
- Eszter Hars, PhD
- May 30
- 5 min read
Updated: Jun 2
Last month, SDS Alliance announced a significant grant from the RTW Foundation for prime editing gene therapy development for Shwachman-Diamond Syndrome — one of the most promising developments in our research portfolio to date. In that post, we introduced an analogy that has been at the heart of how we think about our work:
We tend a garden.
SDS Alliance does not direct all resources to a single project or a single researcher. We fund multiple therapy pathways simultaneously, build the research infrastructure every scientist in this space needs, and constantly seed new global collaborations. In this garden, our patients and families are the sun. Their energy, their participation, and their collective voice draw researchers, biotech partners, and major funders to our work in ways that no grant application alone can replicate.
Today, we want to talk about how you can help water it.
You do not have to fundraise to support this mission
Participating in SDS-GPS and other research opportunities, volunteering your skills, attending events, and simply staying connected all make a real difference. Fundraising is one option — not an obligation. Patients and families already carry the weight of life with SDS, and SDS Alliance does not expect anyone to shoulder the cost of drug development.
That said, when families do choose to fundraise, it matters a great deal — both for the dollars raised and for something less obvious but equally important.
Why community fundraising matters beyond the dollars
Here is something that surprises many patients and families when they first hear it: the size and engagement of the SDS community is something that biotech companies and research funders actively look at when deciding whether to invest in SDS.
A large and growing base of community participants, and donors — even at $5 a month — sends a message that this community is organized, united, and determined. That credibility opens doors that grant applications alone cannot. When SDS Alliance engages with a research partner or a major funder, the strength of our community is a big part of what we bring.
In rare diseases, participation matters as much as dollars. Every voice counts.
Introducing: Fundraise Your Way to #CureSDS
We just published a free 23-page community fundraising guide — Fundraise Your Way to #CureSDS — for patients, families, and community supporters who want to do something, on their own terms, without it taking over their lives.
The guide covers eight ways to get involved, starting with the simplest:
① Double Your Impact with Employer Matching. The "No-Lift" Option. Check if your employer participates. ② Make an Introduction — if you know a company or foundation that might want to support SDS research, you don't need to make the pitch yourself. A simple email introduction is enough. ③ Pledge your birthday or a special occasion ④ Send a holiday appeal with your annual card mailing ⑤ Host a low-lift partnership fundraiser ⑥ Launch a t-shirt fundraiser through our Bonfire store ⑦ Join Step Up to #CureSDS, our annual virtual fitness fundraiser ⑧ Create your own local event — from a bake sale to a charity golf tournament to anything that works for your community
What's inside the guide
Beyond the options, the guide includes practical tools accessible to patients and families for the first time — all in one place:
A storytelling section that walks you through how to tell your family's story in a way that actually moves people — with a real example and a fill-in template you can personalize in minutes.
Ready-to-use social media templates for every stage of a fundraiser — launch, midpoint, thank-you, and final push — as well as occasion-specific templates for birthdays, Step Up to #CureSDS, and local events.
An appeal letter template that works as a printed letter, a card insert, or an email, with guidance on how to adapt it for each format.
A free personalized fundraising video — one of the most distinctive things SDS Alliance offers. We will take your family's photos and short video clips and create a personalized version of our SDS fundraising video, at no cost, any time of year. You just send us your photos. We handle everything else.
A step-by-step guide to setting up your personal GiveLively fundraising page at sdsalliance.org/fund — with screenshots, plain-language field descriptions, and tips for making your page as effective as possible.
Real families, real results
The best proof that this works: real SDS families who have done it.
Rebecca, mom to Declan, who lives with SDS, has raised thousands of dollars for SDS Alliance through Team Declan, using everything from our annual virtual Step Up (fitness) fundraiser to a charity hockey game. She presented her family's experience at SDS POPS 2025 — our annual virtual SDS Patient and Advocacy Summit. The recording is linked below and in the guide, too.
As she put it:
"I used to feel overwhelmed thinking I had to plan a massive gala to make a difference. But when we started small — a customized t-shirt drive and joining the Step Up to #CureSDS challenge — I realized how much our friends and family wanted to support us. They just needed a simple way to do it. It didn't take over our lives. It gave our family a profound sense of hope and control."
Watch Rebecca's full presentation here. Click to go to her section.
How your fundraising connects to the garden
SDS Alliance uses a strategic, milestone-driven approach to research funding. We do not write blank checks to researchers. We negotiate outcome-based agreements and make milestone payments only when science delivers. Community fundraising gives us the resources and credibility to pursue and sustain those efforts — to keep the garden growing even when one path hits an obstacle.
As we said in a recent post:
Funding does not equal impact. Funding plus strategy does.
Every dollar raised by our community strengthens our ability to pursue the partnerships and programs that will give SDS families more birthdays to celebrate.
Get started
Download the free guide at sdsalliance.org/fundraise, or set up your personal fundraising page right now at sdsalliance.org/fund.
Questions? Ready to talk through an idea? Email us at gifts@sdsalliance.org — we will help you find the right fit.
Want to receive our year-end fundraising toolkit when it launches this November?
Sign up for SDS Alliance updates and we'll make sure you don't miss it.
There is strength in numbers. Let's use it to #CureSDS.
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