WPIW 2023 – History & How to Help

Each year during World PI Week (WPIW), we’re reminded of our history and the significance of this global awareness week. Everything we do is motivated by love, earnest devotion, and motivation to fulfill our mission, inspired by Jeffrey. 

Courage and humor were Jeffrey’s greatest assets. He created the passion for our work! Jeffrey never knew that he would impact the lives of thousands of children and families he would never meet, and we were determined to use his optimism as our motivation when we created the Foundation in 1987. 

When we learned about Jeffrey’s diagnosis, there were so many anxieties due to the limited medical knowledge at the time, and we traveled the world to seek advice from several global immunology experts. Since the early days of the Foundation, one of our main goals was to create a support network so that patients, families, and physicians would have access to a built-in community, and no one would ever have to experience the diagnostic odyssey alone. 

We never could have imagined all of the incredible scientific discoveries that have been made over the past thirty-six years, and we’re proud to celebrate the global PI community each year during WPIW. We are thrilled to have witnessed the drastic improvement in patient outcomes, increasing numbers of diagnosed and treated patients across the globe, and continued advocacy for better access to treatments and best practices to improve patient’s quality of life. 

We are thankful to every individual who has supported us on our journey so far. This week, we hope you’ll support the global community by joining us on our mission to spotlight PI patients worldwide and providing hope for a better future. Below, we’ve compiled a list of our top-requested resources that encourage earliest possible diagnosis, education, and expert care:

• Need an immunologist? Find an expert near you on our interactive world map.
• It can be overwhelming to understand the unknowns of PI. Our FAQs can point you in the right direction. 
• Curious about your specific defect? We’ve compiled a list of specific types of PI to encourage better understanding of your disease.
• Sign up to be a plasma donor – plasma saves lives! 
• Use your voice – if your country doesn’t participate in Newborn Screening yet, speak up to encourage action!
• Looking for activities or community support? Find a patient organization(s) in your region or apply for a WIN grant.
• A great way to educate your friends, family, and peers about PI is by watching our documentary “Do Something: The Jeffrey Modell Story,” now available on YouTube.
• Have a question about your pharmaceutical product(s)? Find patient guides and resources from our pharmaceutical partners here. 
• Our “Roots & Wings” program provides travel support to patients and their families who may require medical treatment and care far away from home. Learn more about how to apply here. 
• Donate to our cause to help fund innovative research grants and discoveries.

It’s our hope that these materials—which are updated frequently—will help to improve PI management, care, and ultimately, save more lives. Please share with your friends, family, and community to support our lifesaving work!

We are grateful to our 2023 WPIW sponsors: 

• Takeda
• Grifols
• Enzyvant
• Horizon Therapeutics
• CSL Behring
• Pharming
• X4
• Octapharma
• PPTA
• ADMA Biologics
• Chiesi