It’s always busy in the Global Village, and that’s why we want to share all the important activities and topics at the Town Hall. This is where you can find all of our press releases on global awareness, physician education, research, patient support, advocacy, and more.
To date, $3.7 million has been awarded by the Jeffrey Modell Foundation (JMF) for research into genetic immunodeficiency diseases known as Primary Immunodeficiency. Research programs focus on translational research and support of underserved regions with healthcare disparities, with projects currently being conducted in 32 countries led by 45 leading investigators.
JMF is set to launch an updated version of their SPIRIT® Analyzer software which is capable of saving $42 billion in preventable healthcare costs. After conducting a multi-year study, this upgraded and highly advanced screening tool will be introduced to major healthcare organizations and hospital networks.
For more than 30 years the Jeffrey Modell Foundation (JMF) has focused its efforts on the immune system because it holds the key to conquering many diseases that have plagued humankind. Millions of people around the world die needlessly from conditions that could be cured or prevented if the immune system functioned normally. The failure of the immune system to function properly contributes to two-thirds of the deaths of all Americans who die from infections each year. “Simply put, harnessing the power of the immune system represents one of the single greatest disease-fighting, and life-saving strategies that biomedical science has to offer. The best medicine lies within us!” exclaims Fred Modell, Co-Founder of JMF.
In light of the need for greater physician education and public awareness for Primary Immunodeficiency (PI), the Jeffrey Modell Research & Diagnostic Centers continue to open in cities and countries around the world.
In celebration of World Primary Immunodeficiency Week (WPIW), the Jeffrey Modell Foundation (JMF) has created a new virtual awareness initiative by attaching “wishes & dreams” to their annual balloon launch. Entitled worldPIwish, short animated films will be shared on JMF’s social platforms daily, with the Foundation spotlighting and highlighting different groups of people who are important to the Primary Immunodeficiency community. The new campaign launches Sunday, April 22nd.
There is an overwhelming and fundamental need for greater physician education and public awareness for Primary Immunodeficiency. In response, the Jeffrey Modell Foundation's (JMF) pledge to help affirm an absolute commitment to clinical and basic research in order to better understand and treat this condition, has materialized in the opening of 11 new Diagnostic and Research Centers and Networks across five continents; Africa, Australia, Asia, Europe, and North America.
"We decided to create a Virtual Balloon Launch. We took a chance; hoping people would see the video. We would have been thrilled to reach 10,000 viewers. But this initiative went "viral" almost immediately, quickly reaching more than 1 million a day and still going strong." -Fred Modell, JMF Co-Founder
"Let's raise the balloons together, as one strong voice to affirm our dedication, passion, and commitment to our mission… to raise awareness, improve diagnosis, and advocate for equal access to treatment of PI worldwide. One balloon… one life saved. All we're asking is for people to share and help create awareness" said Vicki Modell, Co-Founder.
Our founders, Vicki and Fred Modell, spearheaded efforts to require newborn screening for Severe Combined Immunodeficiency (SCID) in the United States for several years in Washington D.C. In 2018, newborn screening for SCID was finally implemented in all 50 states, Washington D.C., Puerto Rico, and the Navajo Nation. We continue to advocate for SCID screening worldwide because early diagnosis saves lives! See if your country participates in newborn screening for SCID below.
Don’t see your country listed? Send a note to your representatives using our template letter.
Conducting population screening | Conducting screening in select areas | Current or past screening pilot programs | |
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Europe |
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*As of June 2023
World Primary Immunodeficiency Week 2023 was a great success! From all of us at the Jeffrey Modell Foundation, thank you to the expert physicians, patient groups, and other individuals around the world who participated in this year's global movement to raise awareness, create dialogue, and strengthen the bonds of our community. Read the outcomes report and press release below!
The World PI Week 2023 campaign report is now out! This year on 22 - 29 April, the campaign focused on turning real-world data into knowledge for better PID care.
You can read the 2023 WPIW outcomes report here for an overview of the many activities that have been organized worldwide to show support to improve the quality of life of patients. The outcomes press release is available here.
If you are aware of additional initiatives, please get in touch with us at: info@worldpiweek.org so these can be captured in the report as well.
Once again, thank you to everyone who joined the Week and contributed to its success!
To view past World PI Week efforts, choose a year below:
It takes 130 plasma donations to treat just ONE patient living with a PI for a year. There is currently an increased need for plasma, and you can be the solution! Plasma can’t be made artificially in a lab—it can only be gathered from healthy donors. Will you sign up to give the gift of life?