Giving 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…

Read More
The Kaitlyn Lovett Memorial Christmas Tournament continues to give back!

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 More

Community 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 More

Update 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 More

Global 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 More

Dave’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 More

The 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…

Read More