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189 Miles in 24 Hours: A Story of PI Awareness

October 15, 2018

Joaquin Gonzales has taken on the notable mission of running 189 miles in 24 hours all in the name of primary immunodeficiency diseases (PI). Having met someone who is living with PI and attending a few IDF events, Joaquin recognized the essential need of promoting PI awareness. With this, he decided to run in support of the PI community and IDF.

Read below where Joaquin shares his story that describes what inspired his rousing journey with PI awareness.

Pictured: Joaquin Gonzales

“Someone very dear to me has been living with Common Variable Immune Deficiency (CVID), a type of primary immunodeficiency disease (PI), for a few years now.

Through the time I have gotten to know her, I have seen the ups and downs that come with living with PI. The mornings where she got ready for work and wanted to go right back to sleep because it took everything out of her. The days where the joint pain was so painful that she had to escape somewhere so no one would see her cry. The constant visits to doctors for what seemed like never-ending infections. The unrelenting battle with health insurance companies and phone calls that left her emotionally exhausted.

What’s most inspiring is even through all of this, she still deals with all of life’s normal struggles and makes the best out of every day. Simple things we take for granted—like hanging out with friends or taking our dog for a walk—can become the hardest tasks for those living with these rare diseases.

I was also inspired when I attended IDF Walk for PI – Los Angeles and the IDF 2017 National Conference in Anaheim, CA. These were truly eye-opening events where I got to meet so many others that deal with PI and to hear their stories and how they weren’t letting it stop them from living their lives was truly inspiring!

To me, PI awareness means not just educating others for the present time but more importantly educating them for the future. Educating the public and our health professionals is very important—especially for a fairly new illness (the first PI was diagnosed in 1952) where there is a lot that we still don’t know and a lot more research that needs to be done. The more awareness we can bring to the PI community and the amazing work and research that is being done by the Immune Deficiency Foundation and physicians, the better for the future of treatments and diagnosis.

I am raising PI awareness with my Zebra Run, where my goal is to run 189 miles in 24 hours to beat the existing record of 188.62 miles. While on this journey, I will be posting a video blog once a week with some personal stories from my experiences of being close to someone with a type of PI, as well as bringing awareness through social media with information and facts about PI. I knew I wanted to do a fundraiser but wasn’t quite sure what it was going to be. It finally came to me: why not do something I love, and help others while doing it? For me personally, it will be a great challenge and goal to try and accomplish, and being able to help bring awareness to PI will make it an even better accomplishment.

My biggest piece of advice for those looking to promote PI awareness is that talking to people face-to-face is your best asset. Some people who have donated to my cause did so because they saw how important it was for me when I was talking to them. And if you can, do video blogs. That is another way for people to see how passionate you are, and you are able to reach people and make it feel more personal. That was hard for me in the beginning; putting yourself out there is not easy, so you must push yourself, you will be better for it and you will be able to connect with others better.”  

Thank you for sharing your story and promoting PI awareness in a creative way, Joaquin. To stay up-to-date on Joaquin’s journey, check out his GoFundMe where he set a $1,000 goal!

If you are interested in sharing your story, please e-mail info@primaryimmune.org.

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