•••
I’m writing as a grandfather whose grandson Zac died in 2013 from a condition called neurofibromatosis (NF1), a type of cancer that affects about 1 in 3,000 people. Born in 2002 and diagnosed in 2004, Zac had a short life that was marred by seemingly endless chemo infusions, radiation, surgeries and hospitalizations at the University of Minnesota before he died in 2013. Throughout his life, he was an inspiration to everyone he met through his smile and “I’ll never give up” spirit.
Desiring to help, our family established the Zachary NF Research Fund at the University of Minnesota Foundation. The research to find causes, treatments and cures for NF1 is led by professor David Largaespada, Dr. Chris Moertel and their dedicated research teams.
Our efforts to raise funds in 2010 began with cookbook sales, spaghetti suppers, golf tournaments and donations from family and friends. We’ve raised over $1.3 million to date. Our fund became seed money for attracting government and foundation grants.
Last week we learned that the funding for medical research is in jeopardy. President Donald Trump’s executive order to cut National Institutes of Health payments for Facilities & Administration (F&A) will devastate biomedical research nationwide. [Opinion editor’s note: On Monday, a federal judge put the cuts temporarily on hold.]
The U has a negotiated F&A rate of 54% with the NIH, an agreement that goes through 2028. But Friday night’s executive order reduces this rate to 15%. If this order stands, it would mean that for every $100 in NIH grant money awarded, the University of Minnesota Medical School would get $15 dollars instead of $54. This order is illegal because of a law that says such a change must first be approved by Congress.
According to an analysis by a policy leader at Education Reform Now, “more than $60 million in funding is at risk for the U and more than $50 million for Mayo Clinic in Rochester” (“U chief blasts Trump funding cuts,” front page, Feb. 11). According to Largaespada, this would mean firing faculty and staff, training many fewer MS and PhD students, and ending many promising research projects, including the NF1 research that our Zac Fund supports.