Team Together

Without doubt, one of the most gratifying aspects of our most recent symposium in Washington, D.C. was gathering together as a community to share experiences and encouragement. A number of attendees asked how they could get more involved in operations, fundraising and/or supporting the APS Type 1 Foundation and broader community. In that spirit, we’ve developed the TEAM TOGETHER initiative.

We need help now, and we will make use of any time you have to give. There are lots of opportunities spanning many skill sets and talents. We hope you’ll find something here that speaks to you. If not, and you have some other ideas, let us know.

The success of our organization depends on the work, passion and support of volunteers.  We are grateful to have the support of volunteers from all over to help us carry out our mission. As a volunteer, you will create positive change in the APS Type 1 community while also growing your skills and meeting new people associated with APS Type 1.  If we TEAM TOGETHER, we can expand our reach, help more people, connect more people, and advance our mission of finding better treatments and ultimately a cure. 

Team Together Now! (our first featured opportunity)

The Ask: Help us prepare summaries of symposium sessions for those who couldn’t attend.

The Time: approximately 1-2 hours per session. 1 hour to watch the session and 1/2 hour to write a summary.

The Skills: a willingness to learn and share.

The Why: allow us to better share what we’ve learned.

Starting with our first symposium in 2015, we’ve now organized and hosted five international symposia on APS Type 1. These meetings are critical to our mission is several respects, including:

  • Connecting families with each other. Patients and families learn that they are not alone. Many people met the first other person with APS Type 1 at our symposia.
  • Connecting researchers with each other. A significant obstacle to research is want of collaboration. Because of our symposia, the research community has gotten to know and trust each other.
  • Connecting researchers with families. Researchers can see first hand how their life’s work means something real and persona.

Other Ways to Help

Get the Word Out!

Most people have never heard of APS Type 1. It’s up to our community to educate others. Share your story with others so they can learn about the disorder and what life is like for you and your family.

  • Give a school presentation
  • Speak at your religious institution
  • Host an informational booth at a local health fair
  • Create social media messages related to APS Type 1 to post on our social media channels.
  • Help spread the word about programs and initiatives at the APS Type 1 Foundation on your social media channels.
  • Create memes that show the lighter side of living with APS Type 1.  We know it’s a tough load, but there is a lot to be grateful for and a good laugh always helps.
  • Speak with new families, patients and parents about APS Type 1.

The Foundation can provide you with educational brochures to distribute. Be sure to send pictures and a report following the event so we can share your success!

Help our Fundraising Efforts

  • Contact a local newspaper, radio or tv station that would be interested in interviewing you to raise APS Type 1 awareness and why it is important to financially support the work of the APS Type 1 Foundation.
  • Share your journey and what it’s like to live with APS 1 in a fundraising appeal.

Support Rare Disease Day 2024

  • Encourage our young people to host a school event.
  • Visit the toolkit website for ideas.

Host a DIY Fundraising Event

Family fundraisers are a fun way to raise desperately needed funds for the APS Type 1 Foundation. We are here to help you get started! Do you have an event idea, but don’t know where to get started? We are here to help bring your event idea to life!

We can provide fundraising resources and APS Type 1 branded materials to ensure that your event is a success. All you need is an idea and a group of family or friends to help you execute it. Learn more about how to host an event in your area.

Network with Other Patient Advocacy Groups

We are always looking to network and collaborate with other patient advocacy groups with aligned missions or goals to help find our patients and raise awareness.

  • Become a member of associated disease organizations, such as the Hypoparathyroidism Association.
  • Follow the associations for updates and attend their meetings in your area.
  • Share what you’ve learned.

Help Maintain our Website

Are you tech savvy? Do you know how to use Word Press? We need your help to keep our website up to date and consistent with best practice.

Donate Your Birthday or Wedding

Already blessed in more ways than you can count? Consider asking your guests to donate to the APS Type 1 Foundation in lieu of a birthday or wedding gift. We commit to you that your donations will be put to good use to help find a cure for APS Type 1.

Become a Conference Volunteer

The Foundation hosts a bi-annual symposium. Our next symposium will be in Summer 2025, and we’re already planning. We always needs volunteers to help make the event a success. We could use help with on-site registration and sale of APS Type 1 swag. Student service hour opportunities are also available.

Dennis and Suzanne Totten volunteering at the 2015 Symposium in Toronto.


If you have any questions about volunteering, email us.