Fundraise Your Way to #CureSDS

Thank you for your interest in rallying support for Shwachman-Diamond Syndrome Alliance and our shared mission to #CureSDS!

As a rare disease community, our strength lies in our personal connections. When you share your family’s journey, you aren’t just asking for a donation — you are putting a face to SDS, raising important awareness, and building a community of advocates. These are all stepping stones to achieve our goals, together.

We know that life with SDS is incredibly busy and at times extremely challenging. Your family's health and well-being always come first. There is absolutely no pressure. The beauty of community fundraising is that every single effort, no matter how big or small, adds up to a massive impact. It’s about doing what you can, when you can, to feel connected and proactive. Every dollar raised and every conversation sparked brings us closer to:

Clinical Trials by 2030 — ultimately, giving SDS families more birthdays to celebrate.

A visual representation of our new Fundraise Your Way to #CureSDS, a guide for Shwachman-Diamond Syndrome patients, families, and community

Click to open the Guide

Ways You Can Help

Whether you want to support from home or bring your local community together, we have options to fit every family's schedule, energy, and comfort level:

① The "No-Lift" Option: Become a Monthly Giving Ally

If you don't have the time or energy to plan an event but want to actively drive progress, our Monthly Giving Allies program is the perfect fit. In rare diseases, participation is what matters most. Having a large number of families joining us sends a powerful message to biotech partners and researchers that our community is united and determined to advance treatments. Gifts can be as simple as $5 or $25 a month — whatever is comfortable for your budget. It is a safe, easy way to build sustainable funding for clinical trial readiness right from your home or phone.

② Make Introductions

Do you know someone at a company — an employer, a local business, a foundation — who may want to support your family, our shared mission, and SDS research? You don't need to make the pitch yourself. A simple introduction can open doors and lead to a big impact.

SDS Alliance has a full sponsorship program with partnership opportunities at every level. Email us at gifts@sdsalliance.org to make an introduction or request our sponsorship package, and we will take it from there.

SDS Alliance Fundraising and Monthly Giving Allies graphics (4).png

④ Send a Holiday Appeal

Turn your annual holiday card mailing into an easy way to raise funds and awareness. We can help you draft a short, personalized family message to include with your cards, or we can even print and mail a beautiful, custom appeal letter directly to your friends and family list on your behalf. Whatever works best for you.

Fundraising invitation for the holiday season for rare disease day for SDS Shwachman-Diamond Syndrome Alliance

Holiday Appeal

⑤ Rock Our Cause (T-Shirt Fundraisers)

T-shirts are a fantastic, visual way to raise awareness and funds simultaneously. We have a selection of fun and beautiful designs ready to go in our official Bonfire store. You can use these designs as-is to launch an apparel fundraiser, or our team can help you customize them with your team name or inspiring message! If you're feeling creative, you can even design your own custom apparel to benefit the cause.

Girls just wanna have fun T shirt mockup.png

③ Pledge Your Birthday or Special Occasion

Make your next milestone extra meaningful. Instead of traditional gifts, you can invite friends and family to donate to the SDS Alliance for your birthday, anniversary, or wedding. We can help you set up a simple Facebook fundraiser or a customized GiveLively digital campaign to make sharing your page with loved ones a breeze.

⑥ Low-Lift Partnership Fundraisers

Consider coordinating a simple partnership campaign. Programs like hosting a virtual Pampered Chef cooking party are incredibly low-lift. While these may be lower reward than a large-scale event, they are a steady, simple way to show your support and do something positive without overwhelming your schedule.

⑦ Join Our Annual Virtual Event:

Step Up to #CureSDS

Launch a team for Step Up to #CureSDS (www.sdsalliance.org/steps), our annual virtual step-counting and fitness challenge. It is a wonderful, low-pressure way to connect friends, family, neighbors, and coworkers from all over the world to walk, run, or move together in honor of your loved one.

⑧ Create Your Own Local Event

From a neighborhood lemonade stand, backyard bake sale, or school dress-down day to a charity golf tournament, creating your own independent event is a wonderful way to bring your immediate community together.

Real Stories, Real Impact

I used to feel overwhelmed thinking I had to plan a massive gala to make a difference. But when we started small, with 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.

— Rebecca, mom to Declan (age 9, living with SDS), NJ, USA

Rebecca presented her family's experience at SDS POPS 2025 — our annual virtual SDS Patient and Advocacy Summit. The video below takes you right there, to her section.

Tools We Provide to Make it Easy

We want to take the administrative burden off your shoulders so you can focus entirely on your community. When you partner with us for an event, the SDS Alliance can provide:

Personalized Digital Fundraising Pages

We will help you set up your own customized fundraising page powered by GiveLively, making it simple and secure to collect online donations AND tell you story. You just add a photo of your SDS hero and a brief note, and you're ready to share!

To get started, ① click on Start a Fundraiser on any of our GiveLively fundraising pages. ② Add a photo and your brief story, and ③ share your page with your network. See our guide, linked above, for more details.

A person setting up or reading a personalized fundraising page on a computer schreen, in support of Shwachman-Diamond Syndrome Alliance.

Custom Graphics, QR Codes, and Text-to-Donate

We can generate custom flyers, letters, or digital cards complete with a dedicated QR code or a "Text-to-Donate" code, making it incredibly easy for people to give instantly from their mobile phones -- at your event or anytime, anywhere.

We can even help set up a custom T-shirt campaign for your community!

SDS Alliance-Branded Materials

We can supply flyers, brochures, and literature to distribute at your event. We can even ship a pop-up banner to anchor your event.

A person enjoying reading the personalized trifold brochure created by the Shwachman-Diamond Syndrome Alliance

Promotional Support

As staff time allows, we can help you craft letters, emails, press releases, and flyers to spread the word.

Official Authorization

We will provide an official letter of authorization to validate the authenticity of your event and its organizers to prospective sponsors or donors.

Donor Transparency

When you use your customized fundraising page on GiveLively, you will be able to see who has donated to you campaign and how close you are to your fundraising goal! This will help you thank your donors and community.

Hockey fundraiser for Shwachman-Diamond Syndrome Alliance and research. Kickoff showing hockey players and SDS family being honored.

How Your Contributions Make a Giant Impact

We don’t just throw funds at a single, isolated project. Instead, we use a smart portfolio approach. We think of it as tending a garden of cures.

When you fundraise or give to the SDS Alliance, your dollars act as the water and nutrients that fuel this entire ecosystem:

Nourishing the Roots: Your support builds essential research tools and infrastructure—the underlying soil that all scientists need to move SDS research forward, effectively.
Tending Multiple Sprouts: We fund multiple therapy paths at the same time. By helping different ideas grow simultaneously, we ensure that if one path hits an unexpected roadblock, other treatments are already growing right behind it.
Sprouting New Projects: We constantly plant new research and infrastructure seeds, tracking down fresh collaborations and expand our global community of experts.

In this garden, our patients and families are the Sun. Your energy, your personal stories, and your collective participation are what draw academic researchers, biotech partners, top advisors, and major funders to our ecosystem. Together, we are keeping these budding cures growing every day

—to bring clinical trials to reality by 2030 and give our families more birthdays to celebrate.

Friendly Guidelines & Limitations

To protect your family and ensure our community's fundraising aligns smoothly with legal and organizational policies, all independent activities (known as "Third-Party Events") just need to follow a few standard guidelines:

Clear Branding: Promotional materials must make it clear that the SDS Alliance is the beneficiary of the event, not the host. For example, please use names like "The Jane Doe Golf Tournament, benefiting SDSA" rather than "The SDS Alliance Golf Tournament".
Logo Approvals: Any materials featuring the SDSA logo (including flyers, custom t-shirts, and posters) must be reviewed and approved by the SDS Alliance prior to printing or online distribution. Email us at connect@SDSAlliance.org
Expenses and Tax Exemption: Event organizers are fully responsible for event planning, safety, and expenses. SDS Alliance cannot advance funds, reimburse expenses, or extend its tax-exempt status for event purchases. We highly recommend securing local event sponsors or charging a registration fee to cover your overhead costs.
What We Cannot Provide: Please note that legally, SDS Alliance cannot provide insurance or liability coverage for independent events, mailing lists of our existing donors or vendors, official SDS Alliance stationery, tax receipts for donations not made directly to the SDS Alliance, celebrity booking (wish we could :)), or staff attendance.

For all details, please check out our Gift Acceptance Policy, linked in the footer of this website.

Ready to do something special?

We are so incredibly grateful to have you in our community. If you want to chat about an event idea or best practices, customize a Bonfire T-shirt design, set up a GiveLively page, or become a Monthly Giving Ally, please reach out to us at gifts@sdsalliance.org. We are in this together!

current fundraisers