3 Real Ways This Video Can Teach You How to Advocate for PI

I’ve found that through all of this, my son has started asking, ‘How can I help? What can I do?’

In a way, those are the very things the Immune Deficiency Foundation (IDF) asked Amy Walsh, the mother of an 11-year old boy with a combined immunodeficiency disorder.

In her IDF Reel Stories video—a series that gives a face to the primary immunodeficiency (PI) community—Walsh talks about the remarkable and heartfelt ways IDF offered her help when she needed it most, including:

  1.  Education

Walsh knew she had to become her son’s voice, but how? Thanks to the materials IDF provided, Walsh was able to create better questions for her doctor and learn how to be a better advocate for her child.

  1. Connections

We all know that meeting other families who share your rare disease can be life-changing. That’s an experience Walsh wanted for herself, and through IDF, she’s been able to start up two meetings a year right in her area.

  1. Volunteer Opportunities

Walsh had a difficult five year journey to diagnosis with her son, something she doesn’t want for others. So just like IDF asked her once upon a time, Walsh called them up and asked, “What can I do?” Now, her state has started a new screening for SKID.

Hearing her speak and watching her face, it’s clear that Walsh has forever been changed by her association with IDF—and it’s a change for the better.


Kiki Jones

Kiki Jones

Kiki’s family loves to say, “People are like a baking project. At some point, they’re just done and they’re who they’re going to be.” Well, Kiki still has some baking to do, and she learns a lot from her loved ones living with chronic conditions, including mental illness and Behcet’s disease. With a BA in English, she’s using her skills to tell the stories of people like them.

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