The beginning of a new year is upon us, and as always, it’s a time of reflection… where have we been, where are we now, and where are we going..?
2014 has been a remarkably successful year for Jeffrey’s Foundation, and I am so proud of all that has been accomplished!
The Jeffrey Modell Centers Network now includes more than 600 physicians at 248 academic institutions, in 206 cities, 78 countries, spanning 6 continents and we’re still growing!
Nine states, including Illinois, Maine, Nebraska, New Jersey, New Mexico, Oregon, Rhode Island, West Virginia, and Wyoming, as well as the District of Columbia, have implemented mandatory Newborn Screening for SCID, bringing the total to 26 states!
We have also significantly invested in research this year. The Translational Research Program awarded five grants, our Specific Defect Research Program awarded two grants, and our very first CHILDREN!® program launched, and we awarded our first grant!
This year we have also made strides in the way we have further strengthened and spread our mission through our Scientific Publishings; An analysis and decision tool to measure cost benefit of newborn screening for severe combined immunodeficiency (SCID) and related T-cell lymphopenia., and Global overview of primary immunodeficiencies: a report from Jeffrey Modell Centers worldwide focused on diagnosis, treatment, and discovery.
JMF “KIDS DAYS”, days of sharing, caring, and hope, create events outside of the hospital, where patients, their families, and the physicians and nurses can relax and enjoy fun activities, while also connecting with each other and often making friendships that last forever. This year we were able to host 15 “KIDS DAYS” all over the country!
WIN, WinMD, and WinRN, have also been able to help patient organizations, physicians, and nurses to provide encouragement, assistance in developing awareness and educational programs, patient support, advocacy for equal access to care and appropriate treatments, and travel to medical meetings worldwide. This year we were ecstatic to sponsor 53 grant programs!
One of the programs closest to my heart, Roots & Wings, was able to assist 11 babies and their families, with funding for travel and housing while receiving stem cell transplants. I am filled with so much joy to help these families through this heart-wrenching time, arrange for their children to receive the proper treatment and the opportunity for a full and healthy life, and at the same time, ease the burden of financial worries.
This year we also established a new community oriented campaign on our social channels. We asked friends and family to help spread awareness, education, and advocacy by helping us “Burst the Bubble” About Primary Immunodeficiency. I love the creativity used to make the “bubbles” and look forward to receiving more photos in the future, especially during World PI Week as we host our “Balloons and Bubbles” launch worldwide!
We have also had a very strong bond with our community. Your voice has become stronger and I am so touched by the beautiful things you have shared with us. You have allowed us into your lives and for this we are sincerely honored.
Jeffrey’s request to “do something” continues to ignite a fire inside of me, and I am so thankful for all of you who have supported us and our mission to help better the lives of those affected by Primary Immunodeficiency. We still have a long way to go, with so much more to “do”.
Join us in our mission of hope, advocacy, and action, and together let’s make 2015 the best year ever!