MMF 2008 Annual Report
The Wicka family started the Nash Avery Foundation in 2002 to support aggressive, cure-focused research.
Winning the race against time
Families’ support expedites promising muscular dystrophy research
When toddler Nash Wicka began learning to walk, his father noticed right away that something wasn’t right. “His coordination looked really off,” says Tom Wicka. Nash, then 3 years old, was referred to neurologist John Day, M.D., Ph.D., who immediately suspected Duchenne muscular dystrophy. A blood test confirmed the tragic news.
Duchenne, which affects only boys, is caused by a genetic mutation that prevents the production of dystrophin, a crucial protein for maintaining muscle structure. Without it, muscles stop working and eventually deteriorate. The disease is often fatal by age 20.
“The diagnosis was shattering,” Wicka says.
“At first, all we did was talk about the diagnosis and cry about everything Nash wouldn’t be able to do,” says his mother, Angela Wicka.
But the Wickas, of Minneapolis, soon turned their despair into a fierce mission to help Nash and all boys with Duchenne by founding the Nash Avery Foundation in 2002. Through donations and an annual Bash for Nash gala, the foundation has been raising funds for aggressive research to cure the disease.
Half-way across the country, in South Egremont, Massachusetts, Tracy and Benjamin Seckler, M.D., had started Charley’s Fund after their son Charley was diagnosed with Duchenne.
The two families recently united their efforts to accelerate Duchenne research by making two joint gifts totaling nearly $1.8 million to the University of Minnesota. In 2007 they gave $762,000 to support the work of University biochemist James Ervasti, Ph.D., and last November contributed $1 million to fund an international collaboration focused on stem cell research.
Ervasti is exploring ways to transport utrophin—a protein that can act as a substitute for dystrophin—to the muscle cells. Preliminary results show muscle improvement in a mouse model treated with this therapy.
Maurilio Sampaolesi, Ph.D.
The $1 million gift supports the research of stem cell expert Maurilio Sampaolesi, Ph.D., who holds a joint appointment at the University of Minnesota and Katholieke Universiteit Leuven in Belgium. Sampaolesi is investigating the use of stem cells from healthy donors to repair muscle in children with Duchenne.
“We’re at the brink of developing very meaningful treatments,” says Day, Nash’s doctor and director of the University’s Paul and Sheila Wellstone Muscular Dystrophy Center. “In the next few years, one or more of these approaches is likely to slow this disease dramatically.”
While these important research efforts offer hope for Nash, now 9, and Charley, 7, their families have provided funds to other high-potential projects both in industry and academia.
“We are trying to expedite the most promising work in the lab and get it into the clinic so our children can realize the promise,” says Benjamin Seckler.
For both families, it’s a race against time, and money will accelerate the research, says Tom Wicka, echoing the Nash Avery Foundation website: “It’s cash that allows researchers to take creative detours and collaborate more readily. It’s cash that kicks open another door to an eventual cure.”
