The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
Marilyn Rifkin, diagnosed with Common Variable Immune Deficiency (CVID), attended her first IDF educational event in 2019. During the event, she was inspired and thought IDF offers so much; it’s so important that patients and families know about this organization. Without a second thought, she decided to volunteer as a walk-chair to bring a community walk to her hometown in Denver, Colorado.
Marilyn began to work very closely with IDF Walk Staff to establish a location, date, and other essential details to bring a walk to her city. Unfortunately, as plans came together, the COVID-19 pandemic hit. The walk venue had to be canceled, and a virtual option had to be put in place. However, this did not stop Marilyn or long-time IDF volunteer, Deborah (nickname Debbie) Junk, from making the walk a huge success.
Once the walk turned virtual and the Denver walk platform launched, Debbie, a Get Connected Group (GCG) facilitator in Colorado, took the initiative to support the walk by organizing a team including members from the Colorado GCG. Once hearing about the organized team, Marilyn reached out to Debbie, indicating her involvement with the walk making it a no-brainer for her to become a co-captain of the team!
Together, this dynamic duo raised over $3,000 for the walk. Marilyn and Debbie both agreed that when fundraising, the most important thing is to utilize every personal contact you know, not be afraid to share your personal story, explain why the funds are needed, and how they will be used.
Debbie shares, “My advice for anyone attempting to do this, and I hope you will, is to not underestimate the generosity of people. Show them how the organization benefits you and how much their donation would mean to your wellbeing, and I think you’ll find that family, friends, and acquaintances that you haven’t heard from in years will come to the rescue. Both Marilyn and I found that to be true.”
In the end, a virtual walk was not what Marilyn had envisioned, but it turned out to be a great blessing in disguise. Not only did it allow community members such as Debbie, who suffer from continuous vertigo and require the use of a walker, to participate, but it also allowed for more creative fundraising through the use of Facebook fundraiser, social media, email, etc.
Marilyn states, “As it turned out, a virtual walk was the best thing that could have happened. Without the constraints of a geographical location, our fundraising area became unlimited. People could join from anywhere, and they did. It was easy to reach a lot of potential donors through social media. I hope IDF continues virtual walks and builds on the expanded donation opportunities.”
Thank you to Marilyn and Debbie for being IDF Walk for PI volunteer rockstars! IDF appreciates all that you do, and we can’t wait to see what you both achieve in the 2021 walk season.
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
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