I would like to warmly and personally welcome you to the Jeffrey Modell Foundation’s Global PI Village blog, “my inspiration, my words.” For some time now, we have been thinking about recreating our website. We understand the importance of the data and medical information, but it is about much more than the statistics. It’s about growing a community and bringing people together across states, nations, and even the globe. It’s a home in which our community can gather; a warm, supportive place. It’s a platform for patients and their families to unite and seek answers from both the Foundation and each other; answers that for so many have taken far too long to find; answers to questions that can provide clarity and hope. We are a second family that is here for you when the going gets tough and the road takes an unexpected turn.
Today I am here to share my story with you, my inspiration, my words, with the hope that each and every one of you will feel that you can do the same. Today is special, not only because it is the launch of a new website, but because it is the bonding of a community that no ocean or border can separate. My belief is that in order to create this bond, it is to tell you all who I am and how I got to where I am today.
My husband, Fred and I created the Jeffrey Modell Foundation. It was not founded in memory of our son’s death, but rather in celebration of his remarkable life, and to save lives… the lives of babies born today, those yet to be born, and in memory of those for whom science and medicine had not caught up. We accept the reality that science and discovery did not come in time to save Jeffrey, but we are dedicated and committed to saving others. Jeffrey never knew how he would change not only our lives but also the lives of many thousands of children that he would never meet.
And our journey began in 1987, building our Foundation from the ground up. Since then, we have circled the globe from Shanghai to Sao Paulo, from Minnesota to Morocco, from Tennessee to Tunisia, from Argentina to Australia, from New York to the Netherlands and all that’s in between. The work of the Foundation has taken us to major academic teaching hospitals throughout the United States, Canada, Europe, Eastern Europe, the Middle East, Latin America, Asia, and Africa.
More than thirty years later, we now have 821 Expert Physicians in our Jeffrey Modell Centers Network, working at 379 academic teaching hospitals, serving 294 cities in 86 countries, and spanning 6 continents. There are now more than 150 Jeffrey Modell Diagnostic and Research Centers throughout the world.
No matter which country we are in, there is one constant that all of these places have in common: so many children and adults suffering with chronic and recurring infections go undiagnosed. These disorders keep them from enjoying a full life. Their illnesses interrupt their activities, detour their plans, and shatter their dreams. We have met so many of these patients as we travel throughout the world. The stories are similar, the disappointments are the same, and it’s time for a change.
Our mission is to reach out to these patients through comprehensive programs of physician education and public awareness to ultimately give each and every child a chance to shine, to learn, and to provide them with hope for normal and healthy lives, and bright futures.
Hope is possible because of the brilliance and compassion of the physicians, the resolve and dedication of the researchers, the perseverance of the quiet, the unsung heroes working days and nights in their labs, the bravery and courage of the families, the vision and constant support of our donors, and most of all, the patients who inspire us, propel us and compel us to continue on our incredible journey.
We are more dedicated to our mission than ever. Our motivation to find cures grows with each and every passing day. We are devoted to early and precise diagnosis, meaningful treatments, and ultimately, cures—through clinical and basic research, physician education, patient support, advocacy, public awareness, and newborn screening.
So, with all of that said, I am so thrilled that we can launch such a unique platform for self-expression, helpful discussions, and to connect families and patients with PI from around the world. We will provide answers, we will provide assistance to guide people in the right direction, and we will provide compassion, support, and hope! The Jeffrey Modell Foundation stands for Hope, Advocacy & Action! And today, with the launch of our Global PI Village, we will continue to provide hope, we will continue to advocate for our community, and we will always take action to provide a better place for our patients with Primary Immunodeficiency.
I look forward to getting to know each and every one of you. Welcome to our neighborhood!
With hope for our cause,
Vicki