As most of you know, I have a unique immune system. (One in five million according to my immunologist’s latest genetic analysis. It’s good to be special – not that special.) My immune system is severely compromised. While COVID is what sent us into quarantine, that’s far from what now keeps us here. It’s everything – pneumonia, bronchitis, sinus infections, upper respiratory infections, etc. However, my team of doctors has outlined protocols for us to be able to safely interact with people OUTSIDE*. So, summer is our chance for normalcy, and the annual IDF Walk for PI is just the opportunity!
This year marks the 10th year for the Walk for PI, and Team CuKo has walked in every one of them. This year, IDF has also moved a nationally sponsored walk directly into our own backyard; the Milwaukee County Zoo will be hosting the Walk for PI on Saturday, August 5th.
In recognition of the anniversary, the new location, and being outside together, Team CuKo is ramping up team formation and our donation drive early. In April, Team CuKo is finally getting haircuts (three years of arduous growing and doctor approval required). We are donating our luscious locks to Locks of Love; and, to celebrate PI Awareness Month, we want you to help determine how much my wife will get cut. We are both donating a minimum of 10 inches; but she has plenty more to spare, and you get to help decide how much… - Koryn will cut an additional inch for every $1000 donated by April 23rd. - Koryn will cut an additional quarter inch for every new team member added to our walk team between April 16th and April 23rd. - Maximum haircut = 25 inches
So, you can donate or join Team CuKo (or both) before April 23rd to help determine my wife's hair length.
There are a lot of folks in need. If this doesn’t meet your giving plan or budget for this year, no worries. We would still love to hear from you. Drop us an email or text when/if you think of it.
*Some of you may be wondering why is this event "safe"? In general, all activities have risks. Any outdoor activity is safer due to the constant air movement and the ability to comfortably distance ourselves. We continue to wear (double) masks when we know we are going to be interacting with others. We hope the ability to see one another outweighs any awkwardness of the masks.
**The phrase “zebra” stems from a familiar saying: "when you hear hoof beats, think horses, not zebras." In medical school, doctors are taught to focus on the likeliest possibilities ("horses") when making a diagnosis, not the unusual ones ("zebras"). However, sometimes physicians need to look for a zebra. Patients with primary immunodeficiency diseases (PID) are the zebras of the medical world.
In this context, I am a zebra. I was diagnosed with Common Variable Immune Deficiency (CVID) at roughly nine years old. It is a genetic condition; and, as treatment, I receive monthly infusions of IVIG - a drug that essentially replaces my immune system on a monthly basis. (It is administered intravenously over the course of several hours - approximately four in my case.) As a result of my condition, I have developed a myriad complications over the years – some commonly associated with CVID, while others make my a “unicorn zebra”. In general, I am very fortunate in that I am comparatively healthy. Many patients with PID suffer from repeated illnesses, resulting in frequent hospital trips and the inability to attend school or work on a regular basis.