On February 29th, please join us in raising awareness about APS Type 1 as we celebrate the Rare Disease Day! Post messages, photos, videos, or whatever you think best shares your story on social media and add the hashtag #APS1WeAreRare. February 29th is the International Rare Disease Day. This day is dedicated to raising awareness and generating change for the 300…
Read MoreGold Seal of Transparency with Candid
We’ve earned our Gold Seal of Transparency with Candid. Get updates on our impact through our #NonprofitProfile https://www.guidestar.org/profile/32-0241819
Read MoreGiving Thanks on Giving Tuesday
With a lofty goal of $25,000, the Foundation initiated an email campaign in early November, asking members of the community to activate their networks in giving. The idea behind this approach was to expand our reach and get all families invested in our common mission. Email templates were provided to make the process as easy…
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The Kaitlyn Lovett Memorial Christmas Tournament continues to give back!
The Kaitlyn Lovett Memorial Christmas Tournament continues to give back! They raised over $15,000 at last year’s tournament, which supported travel grants to attend our summer symposium for many of our families. Kaitlyn’s mother, Maureen Lovett, shared with the Foundation that it was important to Kaitlyn to positively impact the lives of those with APS…
Read MoreCommunity Spotlight: Payton Ditty
You are not alone in this world, I love you, we all love you and are here to support you through your journey. Payton Ditty Hi! My name’s Payton. I was first diagnosed with APS Type 1 at the age of 7 after an adrenal crisis that lasted weeks. That was the start of my…
Read MoreDave’s Research Corner: Featuring “Autoimmunity and Cancer – Two Sides of the Same Coin”
APS Type 1 research has long been seen as a bridge to gaining insights into the treatment of many other autoimmune disorders, and as this article makes clear, may also help provide a bridge into gaining insights the treatment of cancer. Title Autoimmunity and Cancer – Two sides of the Same Coin Authors Justyna Sakowska,…
Read MoreVideo recordings from the 5th International Symposium on APS Type 1
We are thrilled to share with you that the video recordings from the 5th International Symposium on APS Type 1 are now available on Youtube! Please click here to watch the videos.
Read MoreUpdate on the 5th International Symposium on APS Type 1
We were delighted to see many of you at our 5th International Symposium on APS Type 1. Our symposium brought together APS Type 1 families and medical experts from around the globe. Patients, families, caregivers, researchers, and clinicians had a chance to meet and get to know each other. We are particularly grateful to the doctors…
Read MoreGlobal Genes’ 12th Annual RARE Advocacy Summit
Join board members, Robin Finch and Laura Rivard, at Global Genes’ 12th Annual RARE Advocacy Summit, September 19-21, 2023, in San Diego, California. Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies at the RARE Advocacy Summit. This is an unparalleled…
Read MoreDave’s Research Corner: Thoughts on SSDI, SSI and other benefits
In the early hours of July 28, 2017, Senator John McCain voted to preserve the Patient Protection and Affordable Health Care Act, better known as the “ACA” or even much better known as “Obama Care.” There are two key provisions in this act that are of particular importance to our group: 1. Insurers are mandated…
Read MoreThe 2023 YARR Leadership Academy
Applications for the 2023 YARR Leadership Academy are now open! The YARR Leadership Academy is a series of online classes offered to a select group of advocates between 18 and 30 years old who are ready to be leaders in the rare disease community.YARR Leadership Academy students will learn about the roles and opportunities for patient representation in…
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