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When I first discovered the Immune Deficiency Foundation, I was thrilled to see how much work they do to raise awareness, education, and funds for primary immunodeficiency.
There are over 450 types of PI, which are also known as inborn errors of immunity (IEI). These are all rare and chronic conditions in which the immune system does not function properly. It is estimated that around 500,000 people in the US are living with PI.
IDF Walk For PI
Every year, IDF releases cities and dates where the Walk for PI will occur. I am over in San Diego, and there isn’t a walk here this year, so I will be doing the Coast to Coast walk virtually on December 2nd! The walks are normally 1-2 miles long, but I believe we will have the choice of how long to walk in the virtual one.
Since 2013, this walk has raised over 7 million dollars for PI! IDF has awarded 24 research grants totaling in $811,00 worth of funding from the walks.
It also has served as an amazing opportunity for patients and caregivers to gather together and build connections. Connecting with others with your disease can be a really comforting experience, and I have always loved meeting people that are fellow CVID patients.
So far, IDF has raised $124,727 of their $870,000 goal for the 2023 walks. I have created my own fundraiser, and I am starting with a goal of $125 by December 2nd. If you feel inclined, any donation helps! This is such an awesome cause, and I am so happy to be a part of it.
If you’d like to donate to my fundraiser, you can go ahead and click this link.
Thank you to everyone who supports IDF, I love to see people come together!
If you want to find a walk near you and register, go ahead and click this link.
For those of you attending the Coast to Coast Virtual Walk, I am so excited to see you there. In the coming years, I would like to advocate for a walk here in San Diego!
Use the “Ask IDF” Portal
If you are a newly diagnosed PI patient, a caregiver, or you are seeking more information about PI in general, you can use the “Ask IDF“ option on their website! You can sign up for the portal and learn more about locating physicians, advice for health insurance, connecting with others with PI, and more. This is a great resource for a plethora of needs for patients!
There is also a “Clinician Finder” tool on the IDF website that you can check out if you are looking for a nearby Clinician!
Other IDF Events
If you want to get more involved, you can find other events here! There are support groups and events for certain ages as well. This could be a good way to get connected with other patients in your area!
It can be scary to put yourself out there, but it’s so worth it. The CVID community has supported me and other patients so much! If you are a PI patient, remember that you are not alone.