From February 13th through February 28th (Rare Disease Day), APS Type 1 patients, families, and supporters gathered virtually to participate in a 1000-mile walk. The purpose of the online “race” was to raise awareness of APS Type 1, build community, and fundraise for critical research and programming. The event also honored the memory of James…
Read MoreDave’s Research Corner – March 2023 – Spotlight on Thymmune
Article: “This stem cell startup is designing a therapy to restore and boost immunity” Author: Ryan Cross Newspaper: Boston Globe March 1, 2023, 12:01 a.m. Click here for the link to the article Key quotes: “(Dr.) Wang wants to use his company’s thymus cells as a therapy that helps people getting bone marrow or organ…
Read More#RAREis Scholarship Fund
The EveryLife Foundation for Rare Diseases has established the #RAREis Scholarship Fund to help adults with rare diseases in a variety of educational pursuits, regardless of treatment status. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000 each will be granted up to 70 recipients for the Fall 2023 semester. The program…
Read More[IDF news] Healing the trauma of a life-changing PI diagnosis
Most people associate trauma with distressing events such as a natural disaster, the sudden loss of a loved one, or an instance of violence, but trauma can also result from chronic illness, including primary immunodeficiency (PI)—and that trauma has an impact on mental health. “Typically, trauma is something that is happening outside of us, something…
Read MoreRare Disease Day 2023: Update on 1,000 Miles for APS Type 1
Dear friends and families of the APS Type 1 Foundation: On this Rare Disease Day, we are so moved by the enthusiasm with which you all have embraced our cause over the last few weeks. Together, we far exceeded our 1,000 mile goal for APS Type 1. We’ve logged over 4300 miles, roughly the distance between Atlanta and…
Read More3 Days To Go
***Thanks to you amazing racers, we are only $317 away from reaching $10,000 raised. Check your coats and jeans pockets for that forgotten five or twenty dollar bill and send it in!*** Since so many of us are new to the APS Type 1 Foundation, we want to take this opportunity to explain our work…
Read MoreRemembering James
“A great soul serves everyone all the time. A great soul never dies. It brings us together again and again.” — Maya Angelou And so James Read has brought us all together on this journey, inspired by a too-short life that was nevertheless lived to the fullest. James was just 20 years old when he passed…
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And We’re Off…
Good morning racers! As we leave Wrigley Field and begin our trek to Washington DC, the APS Type 1 Foundation would like to give a heartfelt “thank you” to everyone who is joining us on this journey. Having a rare disease is by definition a lonely experience, so events like this are a welcome opportunity…
Read More27 Miles Fundraiser Update
In honour of James Read’s life and in celebration of his birthday on December 27th, his friends in the UK walked 27 miles in one day. They had almost 30 people to start, meeting by the tree of life outside Lincoln Cathedral, where James was a chorister. Friends, family and teachers joined part way for…
Read MoreWalk 1000 miles for APS Type 1
Thank you for interest in the 2023 “Walk 1000 miles for APS Type 1” virtual trek. Who: Anyone in the APS Type 1 community and their supporters! One of the best features of our online race platform is that participants can log any type of activity. You can run, walk, bike, swim, dance, circuit train,…
Read MoreNIH LAUNCHES FIRST EVER THERAPEUTIC CLINICAL TRIAL IN APS TYPE 1
Dr. Lionakis’ Lab and his team of dedicated healthcare providers at the National Institutes of Health in Bethesda, Maryland, have collaborated with the APS Type 1 community since 2012 with the goals of characterizing disease progression and developing new therapeutic approaches to improving the lives of persons with APS Type 1/APECED. Building on their research…
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