Our countdown to Rare Disease Day 2025 continues. As mentioned in our previous message, over the next few weeks we will be sharing resources to help our families observe Rare Disease Day (RDD) in a way that fits the individual interests, skills, and personalities of our unique community members. The aim of this email is to introduce actions that leverage RDD as an opportunity to raise awareness and fundraise for APS Type 1. Although the activities described below are quite different, they all create an opening to engage with others about APS Type 1 and the challenges of living with a rare disease. We hope you find something that feels like a good fit!

Ways to Support Rare Disease Day

  • Host a bake sale: Schools, local sporting events, churches/synagogues, and popular parks or stores are all great sites for a bake sale. Leo Vogan and his family recently organized a 3-day, give-what-you-can, bake sale at his school and raised over $2500! Leo’s mom, Casey Daghigh, has very graciously developed a guide (above link) for hosting an event. The guide includes information about making flyers and a suggested timeline to make the process easy. Thank you, Casey!!
  • Host a Serving Awareness Dinner: Invite a few (or many) people over and ask them to donate the amount they would have spent on dinner out. The dinner can be grand gourmet or easy casual- whatever fits your schedule and kitchen skills. If you’d like to be a host, click the link for all the downloadable dinner kit items you need to make your party fun and educational!
  • Access Corporate Matching: NORD has created a downloadable “playbook” for raising awareness at work, including how to encourage workplace giving (page 9). Your HR department should have information about whether your company has a donation matching program. Please email info@apstype1.org if you need a support letter about the Foundation to present at work.   

Ways to Collect Donations

  • The APS Type 1 Foundation donation webpage
  • The APS Type 1 Foundation Venmo: use the QR code or go to the app and search for the handle @aps-type1

If you have other fundraising ideas that we can share with the community, please send them to  info@apstype1.org.

Together we can!

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