Julie Purschke, mother of senior Nicholas Purschke, appeared on KMOV last week to discuss her family’s organization, Knockout ALD, which raises money for research of adrenoleukodystrophy (ALD). The TV interview was organized after Missouri added ALD to newborn screening. Purschke spoke on the news about the work Knockout ALD has done to get to this point and their plans for the future.
Getting on the news alone was a major milestone for the organization. It gave them the publicity to hopefully expand to a wider audience.
“That was a huge goal that I had,” said Julie Purschke. “I've always wanted to get some primetime coverage on the TV news. I've been on the radio before, but (until now) I haven't been able to break through the TV media.”
ALD was added to newborn screening in Missouri partly due to Knockout ALD’s advocacy. This means that ALD is now among a variety of diseases for which newborns are tested through a blood sample.
“The wheels were already turning (to add ALD), but then I joined (the Missouri Newborn Screening Force) and gave a face and a name to it, and really advocated and helped. I can't take the credit for it getting started because it was already getting started, but I did help see it to the finish line,” explained Julie Purschke.
With this screening in effect, affected male newborns in Missouri can be identified more quickly and receive life-saving treatment right away.
“We really needed to get ALD on there because it was even more prevalent than a lot of diseases that were being tested,” explained Julie Purschke. “And most importantly, if a baby's identified as having ALD then they can be referred to doctors specialists in that area. … They can go to treatment immediately and have a chance to be healthy like Nicholas, who was caught very early and was able to receive a bone marrow transplant very early when he was healthy without symptoms. And then his disease was halted. So the key for a disease like ALD is early diagnosis.”
Going forward, the Purschke family will continue the Run for ALD, even as Nicholas Purschke leaves for college this fall.
“We’ll just keep doing what we’re doing,” said Nicholas Purschke. “And I’ll be going off to college, but still I’d like to be involved in the organization and then maybe when I’m out of college, take more of a leadership role in it and still keep it going and making it bigger, making it more nationwide, not just sticking to St. Louis and just growing it.”
Julie Purschke and her family remain resolute in continuing their advocacy for those affected by the disease.
“It's just important to get the info out, because a lot of people don't know and haven't heard of the disease and it could really impact families—not just one person, but since it's genetic, it can impact an entire family for generations,” Julie Purschke said. “And to have that knowledge would be so important and is so life-saving.”
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