Father looking for a cure for SMA
Don Heinzman
ECM Editorial Contributor
A father from Delano is leading the effort to build a house, sell it and give all the proceeds to help find a cure for his daughter.
Jeff Martineau’s daughter Isabella, 9, has spinal muscular atrophy (SMA) and has never stood or walked.
He is looking for dollars and cost-cutting measures to build the home in a subdivision west of Delano, and list it at $325,000. It will be a two-story, four-bedroom home with a three-car garage and over 2,500 finished square feet, not including the unfinished basement.
Martineau joined Families of SMA (FSMA) that was organized 20 years ago in Chicago. He already has auctioned two houses, one in Carver and the other in Buffalo, raising $200,000 for the cure. The FSMA assures that 85 percent of funds raised goes to find a cure for SMA.
The contractor, Jim Cleary of Everlast Enterprises, who is not charging any fees, is building this third house. Subcontractors are donating labor and materials, and companies are discounting home building materials. The Beacon Bank has substantially discounted the cost of the site.
Cleary and Martineau hope to have the house completed by June 19, in time for the National FSMA convention at the Mall of America in Bloomington.
Martineau says SMA is the number one genetic killer of children under two. His daughter is doing very well, he says.
Martineau is looking for ways to make the home more saleable and to cut costs, making more money available for research. You can call him at 952-210-2626
The National Institute of Health has told him it will cost $400 million to find a cure for SMA.
Martineau calls SMA the orphan disease, because it’s caused by a missing chromosone. He’s determined to help scientists find what’s missing.
