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One of the world’s most famous actors just tested positive for coronavirus. In Australia. That’s 10,000 miles away from here. And yet, probably 30+ people in my newsfeeds said that the Tom Hanks news made the entire situation feel more real. Closer to home, if you will. Of course, for those of us with a primary immunodeficiency (PI), it’s felt pretty close to home for weeks now. We didn’t need Mr. Rogers to tell us that.

The reality is that the news is coming faster each day. This is not the mid-March I’d imagined for myself or the staff at Immune Deficiency Foundation. Today is March 14 – also known as Pi Day because of the mathematical number that starts with 3.14. Of course our community takes the joke one step further to talk about not Pi, or pie, but PI! That gives us a chance to raise awareness about those with compromised immune systems. It turns out that the entire world is thinking about compromised immune systems at the moment.

What does this mean for the IDF Community?
The team here is focused instead on how to ensure we can best fulfill the IDF mission – and do our daily jobs – as we pivot toward telework. We’re committed to providing as many learning and connecting opportunities as we can even as we announce inevitable event postponements. 

It’s important that you know what we’re doing at IDF to protect patients, families, employees, and partners. One of my main goals is to ensure that you can still access programs that provide a supportive, educational environment for the entire community. Our scheduled events in March and April have either been postponed or will be offered virtually. In March, all remaining Get Connected Groups and IDF Education Meetings will be rescheduled for a later date. In April, we’ll begin providing a virtual option for participating in both.

We’re taking the opportunity to make our meetings more accessible to those in underserved locations. Both the SCID Compass Summit and Advocacy Day will be conducted virtually and we’re thrilled about the possibility of both events being open to new participants. Our spring IDF Walk for PI events (four in total) will each have a virtual option, ensuring that we still have a voice and fundraising opportunities throughout the country. More specialized activities (Rare of the Rare and Stand Up for PI) will be postponed until a later date, but we are committed to making sure that they still happen as soon as we can. 

Managing the Influx of News
Right now, new reports are coming by the hour. It’s hard to navigate. Our own community updates are happening many times each week. I’m sure that it’s a confusing and scary time for you. The best way to get a handle on those updates (at least from IDF) is to subscribe to text alerts. Utilizing text alerts is one of many new initiatives that are being instituted as we provide new virtual participation options and new tools for our staff and volunteers to fulfill the IDF mission remotely.

Sign up for IDF Text Alerts
  • If you have a question about general concerns as a member of the IDF community, continue to utilize Ask IDF when you have a question.
  • The best way for us to monitor what’s happening in other locations is to learn about your experiences. If you have something that you want/need to share and feel that IDF should know about, please email stories@primaryimmune.org

  • If you have a specific question related to your unique circumstance, contact your physician directly.

  • You are the best possible advocate and educator - for yourself, for your family, and for the PI community. Continue to share information about IDF and PI with those you know.

You already know this, but you are part of a very powerful community. My commitment to you is that we use this uncertain situation as an opportunity to bring us closer together. If Tom Hanks can feel close from 10,000 miles away, then we can do it, too!

Happy PI Day!


John G. Boyle, President & CEO

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