Updates on the National Stem Cell Foundation and the researchers, partners and supporters who help advance our mission. Together, we are advancing stem cell research, investing in STEM education, and connecting children in need to clinical trials for rare diseases.
Meet Dr. Joanne Kurtzberg, Internationally Renowned Pediatric Blood and Marrow Transplant Clinician-Researcher
NSCF is delighted to spotlight our longtime advocacy partner, Dr. Joanne Kurtzberg – global expert in pediatric hematology/oncology, pediatric blood and marrow transplantation, umbilical cord transplantation, umbilical cord banking and novel applications of cord blood in the emerging fields of cell therapy and regenerative medicine. She performed the world’s first unrelated donor cord blood transplant in 1993, paving the way for this now routine source of donor cells for children who need a bone marrow transplant and don’t have a matched donor.
Dr. Kurtzberg directs the Marcus Center for Cellular Cures and the Pediatric Transplant and Cellular Therapy (PTCT) program at Duke University, one of the largest such dedicated programs in the country. Children from all over the U.S. and around the world travel to PTCT for access to cutting-edge clinical trials for rare, disabling or fatal genetic disorders and blood cancers. She also directs the Carolinas Cord Blood Bank, one of the largest public cord blood banks in the world.
The NSCF Patient Advocacy Fund at PTCT helps children of limited means participate in these clinical trials by covering the out-of-pocket cost of insurance deductibles and co-pays.
National STEM Scholar Program Celebrates 6th Anniversary
2021 National STEM Scholar met May 30 – June 4 at WKU
While many STEM education programs target high school students, research shows that middle school students who become excited about science are the ones who will pursue STEM courses in high school and major in them at the technical and college level. At a pivotal time in decision-making that will open or close the door to opportunity, however, nearly 50% of 8th graders in America lose interest in pursuing the STEM related subjects increasingly required for any living-wage job.
Although NSCF was originally established to fund adult stem cell research and clinical trials, it became quickly apparent that research funding wasn’t the only obstacle to moving curative therapies into mainstream availability. The growing shortage of U.S. STEM-educated graduates who could fill available STEM jobs had become a national crisis with critical consequences for academic research, new technology development, infrastructure engineering and advanced manufacturing. In 2015, we added education and workforce development to our mission and partnered with The Gatton Academy of Mathematics and Science at Western Kentucky University (WKU) to develop and underwrite the National STEM Scholar Program, an advanced STEM training, national network building and “big idea” project support program for middle school science teachers nationwide. Inspiring students at this critical decision-making age will directly impact how many chose to pursue the STEM skills essential for 21st Century jobs.
Now in its 6th year, we have 60 National STEM Scholars representing middle schools in 29 states; 93% teach in public schools, 43% teach in mid- to high-poverty schools and 41% teach in communities with a population under 15,000. A unique requirement of the program is the responsibility for STEM Scholars to share lessons learned with colleagues in their home schools, districts or states, magnifying impact over multiple classrooms and years. By December 2021, STEM Scholars will have directly and indirectly impacted an estimated 66,000 middle school students in the U.S.
Click here to learn more about the 2021 National STEM Scholars.
As an additional program benefit, the Mary Nixon STEM Scholar Speaker Series brings a national or international thought leader in education to Kentucky each year to spend a day with the STEM Scholar class. This year’s speaker was Dr. Talithia Williams, co-host of the PBS series NOVA Wonders and popular TED presenter.
$2,500 Can Change a Child’s Life
Medical innovation only happens when clinical trials move forward into new discoveries and therapeutic options for people in need. Without sufficient numbers of eligible patients consented, enrolled and financially able to participate, however, clinical trials that could be refined and completed over a relatively short period of time can stutter along for years or fail altogether. Our Patient Advocacy Fund at PTCT, a partnership with Dr. Joanne Kurtzberg, covers insurance deductibles and co-pays for children eligible to participate in clinical trials for rare diseases when those out-of-pocket costs are beyond a family’s means, speeding research to cures for these otherwise fatal or disabling disorders. These are children with no other treatment options and often limited financial resources.
What we’ve discovered in the five years since the Fund was established has surprised everyone involved. The average expenditure per child has been just $2,500 – the difference between clinical trial participation or financial hardship for these families and children returning home for palliative care. To date, more than 138 children have accessed our Patient Advocacy Fund to cover those otherwise unaffordable costs.
Click here to learn more about the importance of clinical trials in a recently published article from our CEO, Dr. Paula Grisanti.