In this issue: Simple Fundraising Ideas to Support SDS Research and Make a Lasting Impact in the Fight for a Cure
Welcome to our timely updates on all things SDS, Science, and Advocacy. We bring you a digest of recent scientific publications, conferences, and other newsworthy content - all relevant to SDS - with links to more details and learning opportunities. Are you interested in anything specific? Did we miss something? Let us know. Email genetics@SDSAlliance.org or message us on Facebook! This is all for you!
DIY Fundraising for Shwachman-Diamond Syndrome: How You Can Fuel Research and Hope for the SDS Community!
For rare diseases like Shwachman-Diamond Syndrome (SDS), the funding landscape is often difficult. While grants and corporate donations support some research, they are rarely enough to address the breadth of medical questions researchers have. Patient-led fundraising is often a lifeline for progress, directly enabling more research, clinical trials, and potential breakthroughs.
With Giving Tuesday a little less than one month away on December 3, 2024, our team at SDS Alliance invites you to participate in DIY fundraising, so our community can help bridge the funding gap, fueling the search for new treatments and bringing hope to families affected by SDS.
Here's how you can start your own fundraising journey, get your community involved, and make a lasting impact for everyone affected by SDS.
You don’t have to be a professional fundraiser to make a big impact! Here are some simple, community-centered ways to raise funds for the SDS Alliance:
1. Host a Neighborhood Yard Sale
Gather items you no longer need and invite neighbors to join. Yard sales are great ways to declutter and raise money while involving the entire community. Have informational signs available that explain what SDS is and the importance of your fundraising efforts.
2. Cook-Off or Bake Sale
Food brings people together! A cook-off or bake sale can be a fun way to get the community involved. Ask local bakeries or restaurants to donate goods, or have friends and family contribute their best recipes. Use this opportunity to set up an information booth where people can learn about SDS and your fundraising goals.
3. Birthday Fundraisers on Social Media
Instead of traditional gifts, request donations to your fundraising page in honor of your birthday. Platforms like Facebook allow you to easily set up a fundraiser, which makes it simple for friends and family to contribute directly to the cause. This also offers a great platform to share why SDS research is so close to your heart.
4. Host an Online Auction or Raffle
An online auction or raffle allows people near and far to support your fundraising efforts. Reach out to local businesses or artisans who may be willing to donate products or services for the cause. Not only does this raise funds, but it also raises awareness among those who may not yet know about SDS.
5. Create Your Own Fundraiser
Have your own fundraising idea? Let your creativity shine and host a DIY fundraiser that is most fun for you and shows off your passion and skill sets. Whether you decide to host a game night or wine-tasting event, the sky is the limit when it comes to hosting your own DIY fundraiser.
Sharing Your Story: The Heart of Fundraising
The most powerful aspect of DIY fundraising is the ability to share your personal connection to SDS. Whether you're a patient, a family member, or a friend of someone with SDS, sharing your unique story helps people understand why supporting the SDS Alliance is so vital and important to you. When people see the faces and hear the stories of those affected by SDS, they’re more likely to connect with the cause on a personal level.
The reality of living with SDS is not widely understood, so every story shared brings us one step closer to building a supportive and informed community that cares about rare disease research. By sharing your journey, you not only inspire others to donate but also help raise awareness for Shwachman-Diamond Syndrome on a larger scale.
Your Impact
Every dollar raised by DIY fundraisers goes directly toward initiatives like:
Accelerating Research: More funds mean more projects dedicated to understanding SDS and developing tools for research, which is crucial for developing new treatments and, someday, a cure.
Clinical Trials: Funding enables developing ideas into clinical trials, giving patients the opportunity to participate in potential new treatments.
Support for Families: The SDS Alliance provides resources and guidance for families navigating this challenging condition. Your support helps them extend these services.
Together, through DIY fundraising, sharing your story, and involving your community, you are paving the way toward a brighter future for everyone affected by SDS.
Ready to make a difference? Start your DIY fundraising journey today! Every effort counts, and together, we can create a lasting impact in the fight for a cure for SDS.
For more information, visit: https://www.sdsalliance.org/fundraise.
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