Raising awareness: Bill named for Jackson County child passes through Minn. House committeeST. PAUL — A Minnesota House committee Thursday unanimously passed a bill designating the third week of September as Mitochondrial Disease Awareness Week, perpetually.
ST. PAUL — A Minnesota House committee Thursday unanimously passed a bill designating the third week of September as Mitochondrial Disease Awareness Week, perpetually.
House File 287, known as “Leo’s Bill,” will likely be brought before the Minnesota House by the end of the legislative session. To become law, it will also need to be brought before the Minnesota Senate and signed by the governor.
The members of the 15-person Government Operations and Elections Committee heard emotional testimony from Jackson County parents Andrew Nesseth and Lindsay Chapman, whose one-year-old son Leo died of Alpers syndrome, a rare and fatal genetic disorder, in June.
“It was difficult. It was emotional, for sure, but it went great,” Nesseth said of his testimony. “We’re elated. It passed, and it did move out of the committee — that’s what our goal was.”
Though the Alpers syndrome that took Leo’s life is rare, it is only one of many illnesses linked to malfunctioning mitochondria, the power plants in a cell that provide it with energy. With defective mitochondria, cells are deprived of energy and may die, causing organ system failure.
Mitochondrial diseases are very common, and mitochondrial links have been found to Parkinson’s, Alzheimer’s, hypertension, diabetes, some cancers and even the aging process in general, Nesseth said.
Nesseth and Chapman view Mitochondrial Disease Awareness Week as the beginning of their efforts to combat mitochondrial illnesses.
“It’s creating a better public understanding, and then, hopefully, from that awareness we can start expanding dedicated funding at the national level and improve research into treatments, improve research into a cure,” Nesseth said.
He and Chapman were supported at the meeting by the testimony of Leo’s grandmother, as well as that of Liz Beer and Jason Berger of the United Mitochondrial Disease Foundation (UMDF). About 50 avid supporters of the cause from all over the region were also in attendance, some wearing t-shirts supporting the cause.
“It was an emotional time. There were members of not just our family, but members of other families that are still fighting mitochondrial diseases with their children,” Nesseth said.
Nesseth, Chapman and their families began their quest for a legislative bill Sept. 23, just a few months after Leo’s death, when they contacted Rep. Rod Hamilton, R-Mountain Lake, asking him if he would be willing to carry the bill.
Hamilton said he would be honored to help, and authored the bill along with Joe Schomacker, R-Luverne, and Kelby Woodard, R-Belle Plaine.
Following Thursday’s committee meeting, Hamilton praised Nesseth, Chapman and the others for their testimony.
“Oh my goodness, it was so emotional… they did a great job, and they were so strong to be able to share their story,” Hamilton said. “It was tough both to share the story and to listen to the story. And you don’t fully understand, I think, how bills like this or resolutions like this are so important, until something like this happens to your family.”
Nesseth and Chapman, meanwhile, thanked the committee and credited the Jackson County community for showing love and support and helping raise $49,000 for the UMDF —which in turn meant Minnesota became the top UMDF fundraising chapter in the nation with a total of $87,000. The funds will go toward research into treatment and cures for mitochondrial illnesses.
The family has not yet made plans for Mitochondrial Disease Awareness Week, but their battle for awareness and for a cure is far from over.
“I’d say bittersweet is the best word,” Nesseth said. “We’re happy that the bill passed, but there’s still a long way to go, and… people are still going through the hardship of this disease where there isn’t a good treatment and there isn’t a good cure.”