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The state announced on Wednesday that Alberta would become the second state in the next state to screen all infants with a rare genetic disorder.

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“Grief can swallow you up completely,” said Essica Zensten Olstad, who lost her son to spinal muscular atrophy (SMA), which gradually destroys the nerve cells in the brainstem that control speech, walking, breathing and swallowing. muscles used. ,

“SMA is robbing the body of the movement. “Every breath becomes a challenge,” Olstad, executive director of the Love for Lewiston Foundation, told a news conference. He called the announcement a “haven”.

His son, Leiston Olstad, died before his six-month-old birthday in 2016, but his symptoms, including shortness of breath and low muscle tone, did not appear until almost two months after his birth.

“Instead of asking why it happened, why Lewiston, we chose to ask, ‘What now?’ “Newborn screening is our ‘what is it now?'” He said.

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Muscular Dystrophy Canada is investing $ 366,000 in the Alberta Pilot Program, which will enhance SMA screening in the county Neonatal Screening Program, which currently tests 21 conditions.

Muscular Dystrophy Canada CEO Stacey Lintern said in a video conference that it would change the lives of children born with the disease.

“Before newborn screening and treatment, SMA-born infants often did not reach their second birthday. The evidence is clear. The sooner the diagnosis, the greater the choice և treatment և supportive care, ”Linter said.

Screening is done through a blood smear collected from a heel bite և can help speed healing before symptoms appear.

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Health Minister Tyler Shandro told reporters that the government would evaluate the effectiveness of the SMA inspection, but he expected it to be publicly funded after a one-year pilot.

Dr. Dennis Bullman, medical director of genetics and genomics at Alberta Precision Laboratories, said children with a positive screen would be referred to specialists who could make a diagnosis.

According to Bullman, because the state program does not check for conditions that do not have treatment, the new screening was designed to provide treatment.

In January, the state announced it would fund Zolgensma, a gene replacement therapy worth $ 2.8 million, on a case-by-case basis. Alberta also provides treatment for Spinraza gene modification through government-sponsored drug programs.

Bullman estimated the survey could cost the county about $ 300,000 a year when it receives public funding.

Ontario introduced a pilot project for its SME screening program in January 2020, making it an official part of the state’s dashboard in July last year.

lijohnson@postmedia.com:

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