Jamie & Kevin’s 30th Anniversary for APS Type 1 – a celebration in support of the APS Type 1 Foundation
A message from Kevin & Jamie
Dear Friends and Family,
We are so honored that you have been part of our lives over the years, and we hope you can join us August 31, 2024 to celebrate our 30th anniversary. As many of you know, our lives changed on August 31, 2015, when Alyssa was hospitalized in the Pediatric ICU of Maria Fareri Children’s Hospital. During that challenging month in the hospital and after extensive testing, she was diagnosed with APS Type 1/APECED, an extremely rare, multi-organ, genetic autoimmune disorder we had never heard of. We were lost, scared, and uncertain how to proceed with ongoing treatment for a disease we knew nothing about, and many doctors were unfamiliar with too. In the months that followed, we were so fortunate to have the APS Type 1 Foundation, a non profit organization founded by families of people with APS Type 1. The foundation serves to educate, raise awareness, and fund research to find treatments for APS Type 1, as well as provide support for APS Type 1 patients and families. You can learn more about APS Type 1 and the foundation’s work here.
The APS Type 1 Foundation helped us find doctors who could treat Alyssa, got Alyssa enrolled in a major NIH study on APS Type 1/APECED, guided us through treatments, monitoring, and disease management, and provided us with the support and community of an amazingly dedicated group. Alyssa navigates the challenges of this lifelong disease with grace and tenacity. The APS Type 1 Foundation, our APS Type 1 family, helps us know we are not alone.
Thank you for all your love and support over the years, and thank you for supporting the APS Type 1 community.
Love, Kevin & Jamie and family
YOUR SUPPORT HELPS:
- Fund research grants to find a cure and treatments
- Support the 6th International Symposium on APS Type 1 in 2025
- Support the 2nd Global Research Conference in June 2024
- Shorten the time to diagnosis
- Grow the patient registry to help critical research
- Increase awareness
- Educate clinicians on best practices
- Expand our global research network
- Support patients and families. Your generosity helps support
patients and families as they manage the challenges of
living and thriving with a chronic illness.
Every Donation Counts
We hope you will consider making a donation to the APS Type 1 Foundation. Any amount is appreciated—no matter the size, your donation can make a huge difference. It’s not just about the money—it’s about the message. Your donation says you believe in the work we’re doing and you stand with those affected by APS Type 1.
You can donate by clicking the button below or by check. The APS Type 1 Foundation is a 501(c)(3) organization. All donations are tax-deductible.
