{"id":5809,"date":"2026-07-13T07:34:54","date_gmt":"2026-07-13T07:34:54","guid":{"rendered":"https:\/\/raleighmovingnews.com\/?p=5809"},"modified":"2026-07-13T07:34:54","modified_gmt":"2026-07-13T07:34:54","slug":"unc-research-contributes-to-new-drug-for-rare-condition-hillsborough-boy-part-of-clinical-trial","status":"publish","type":"post","link":"https:\/\/raleighmovingnews.com\/?p=5809","title":{"rendered":"UNC research contributes to new drug for rare condition; Hillsborough boy part of clinical trial"},"content":{"rendered":"
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HILLSBOROUGH, N.C. (WNCN) \u2014 Families of children with a genetic disorder called Hunter Syndrome are celebrating a potentially life-changing decision.<\/p>

Read more U.S. Marines ID all 9 people killed in sea-tank sinking<\/a><\/p>\n

CBS 17 recently introduced you a family dealing with the disease and a UNC geneticist leading research into a new drug. Now, the FDA has approved that drug, giving hope to children\u00a0with the rare condition.<\/p>\n

Atlas Neuerburg is the friendliest almost-four-year-old you could meet. On a recent afternoon, he greeted us in the driveway of his Hillsborough home, his dad in tow, talking about his day, his dog, and which toppings we\u2019d like on a wooden pizza, which he proceeded to \u201ccook\u201d in his toy pizza oven.<\/p>\n

Before we sat down to talk with Nick and Jenny, his parents, Atlas had shown off his coloring skills and dance moves and requested his favorite record on the record player.<\/p>\n

\u201cAs you can see, he likes to talk nonstop. He\u2019s always learning something new, always teaching us something,\u201d his mom noted, smiling.<\/p>\n

After spending a little time with Atlas, it\u2019s almost hard to believe he has Hunter syndrome, also known as Mucopolysaccharidoses II (MPS II), a genetic disorder affecting the body and brain. It can cause children to regress. losing their skills, their speech, and eventually their lives.<\/p>\n

Atlas was diagnosed when he was 18 months old.<\/p>\n

\u201cThe diagnosis was just devasting,\u201d Nick Neuerburg said. \u201cEverything you could find online, the prognosis was just not good.\u201d<\/p>\n

The Neuerburgs, who lived in Kansas at the time, found out about Dr. Joseph Muenzer, a world-renowned pediatric geneticist with UNC Health and an expert in all types of MPS, including Hunter Syndrome. \u00a0The family moved to the Triangle so Atlas could be part of a drug trial Muenzer was leading.<\/p>\n

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\"Atlas<\/figure>\n
Atlas Neuerburg<\/figcaption><\/figure><\/div>\n

Children with Hunter Syndrome are missing a critical enzyme that removes sugar molecules from cells in the body and brain. That can lead to a damaging buildup of sugar-waste in those cells.<\/p>\n

The trial Atlas became a part of tested a weekly infusion that replaces the enzyme children with Hunter Syndrome are missing.<\/p>\n

\u201cThe drug crosses the blood-brain barrier,\u201d Muenzer said. \u201cThat\u2019s what\u2019s unique. It treats both the physical disease and the brain disease.\u201d<\/p>\n

During his time on the drug, Atlas has shown no signs of decline.<\/p>\n

\u201cHe has just, to us, progressed normally, which is kind of miraculous considering his diagnosis,\u201d his mom said.<\/p>\n

According to Muenzer and his team, other children getting the drug are also seeing positive outcomes.<\/p>\n

\u201cWe have some of the early enrollees, two brothers who are actually living in North Carolina,\u201d Muenzer said. \u201cThe youngest was treated under two years of age. Now, six years later, if I showed him to you, you would not recognize him as having Hunter Syndrome. He\u2019s basically developing normally.\u201d<\/p>\n

Kim Stephens, who works closely with Muenzer, also sees the benefits to children receiving the drug.<\/p>\n

\u201cI knew it was good,\u201d she said. \u201cIt worked. I was amazed by all the kids running around.\u201d<\/p>\n

Stephens is the executive director of the Muenzer MPS Research and Treatment Center, which Muenzer leads. She also has a son with Hunter Syndrome.<\/p>\n

At 15, Stephens\u2019 son, Cole, no longer speaks, but still enjoys puzzles and videos. Cole was not part of the same trial as Atlas, but was part of a clinical trial for another investigational drug for Hunter syndrome.<\/p>\n

That drug ultimately was not approved, but Stephens believes it still benefitted Cole, keeping him from regressing further. Many children with Hunter Syndrome die in their teens.<\/p>

Read more Technical difficulties during CBS Sunday Morning<\/a><\/p>\n

\u201cWhen he went into clinical trial at four, I knew it wasn\u2019t a cure,\u201d Stephens recalled. \u201cI just wanted to keep him alive long enough for something better to come along.\u201d<\/p>\n

Now, it appears something better has. The drug Muenzer was researching and Atlas was getting recently received FDA approval. The drug, developed by Denali Therapeutics, is now called Avlayah.<\/p>\n

The news was cause for celebration at the Muenzer Center and beyond.<\/p>\n

\u201cI just came in shouting and ran down the hall,\u201d Stephens said. \u201cEverybody came out of their offices and we were all hugging and crying.\u201d<\/p>\n

Said Muenzer, \u201cI was exhilarated for the MPS II community. It\u2019s just a monumental sort of breakthrough.\u201d<\/p>\n

Atlas\u2019s parents had a similar reaction.<\/p>\n

\u201cI burst in to tears,\u201d Jenny Neuerburg said.<\/p>\n

\u201cSame,\u201d her husband added. \u201cA lot of tears of joy. It\u2019s been a long road to get here, lots of pushing, and advocating, and just trying to make sure these kids get what they need.\u201d<\/p>\n

Families\u00a0of children with Hunter syndrome and other rare diseases have held demonstrations and signed petitions, urging lawmakers and the FDA to approve drugs that they believe can save childrens\u2019 lives. Both Stephens and the Neuerburgs have recently advocated in Washington, D.C. One demonstration included a coffin to draw attention to the deadly toll these diseases can take.<\/p>\n

There is now hope that Avlayah can change those deadly outcomes. \u00a0It is the first drug to be approved for Hunter syndrome in 20 years and the first to treat both the body and the brain.<\/p>\n

Atlas will continue to receive it, and Cole will begin.<\/p>\n

\u201cWhat I hope for Cole at this point is stability,\u201d Stephens said. \u201cI want more days with him.\u201d<\/p>\n

While the drug can\u2019t make children better once they\u2019ve started regressing, Muenzer believes it can prevent further regression.<\/p>\n

\u201cIt won\u2019t cure them, but it should stabilize, prevent future deteriorations from occurring,\u201d he said.<\/p>\n

Muenzer expects children who get the drug early, \u00a0and continue to get it each week, to develop normally.<\/p>\n

\u201cTo think that, as Dr. Muenzer describes, you won\u2019t even be able to tell that these boys have MPS II is just wonderful,\u201d Stephens said.<\/p>\n

Stephens hopes that parents of young children with Hunter syndrome will never feel the pain she did as she watched her son lose his abilities and his voice.<\/p>\n

\u201cObviously, there\u2019s a wish that it had been around with Cole, but you can\u2019t spend a lot of time there,\u201d she said. \u201cYou can\u2019t live in the past. You\u2019ve \u00a0just got to keep moving forward.\u201d<\/p>\n

Stephens is hopeful that the accelerated approval granted to Avlayah and the biomarker evidence the FDA accepted in granting that approval are indicative that more drugs for rare diseases will be approved in the future. She also hopes Avlayah, which is currently only indicated for pediatric patients, will ultimately be available for older patients as well.<\/p>\n

While there is more work to be done for families dealing with rare disease, this approval is cause for celebration.<\/p>\n

\u201cIt\u2019s just thrilling, it really is,\u201d Stephens stated.<\/p>

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For the Neuerburgs it\u2019s a time of hope and relief.<\/p>\n

\u201cWe are just so happy to know he\u2019ll continue to be able to access this drug and it\u2019s really lifesaving,\u201d Jenny Neuerburg said, smiling.<\/p>

Read more China\u2019s \u2018Green Great Wall\u2019 tames desert growth, but scientists warn the fight is not over<\/a><\/p>\n

Atlas, eyes bright and face beaming, stood in the living room and danced.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

Families of children with a genetic disorder called Hunter Syndrome are celebrating a potentially life-changing decision.<\/p>\n","protected":false},"author":1,"featured_media":5807,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[],"class_list":["post-5809","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"yoast_head":"\nUNC research contributes to new drug for rare condition; Hillsborough boy part of clinical trial - Raleigh Moving News<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/raleighmovingnews.com\/?p=5809\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"UNC research contributes to new drug for rare condition; Hillsborough boy part of clinical trial - Raleigh Moving News\" \/>\n<meta property=\"og:description\" content=\"Families of children with a genetic disorder called Hunter Syndrome are celebrating a potentially life-changing decision.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/raleighmovingnews.com\/?p=5809\" \/>\n<meta property=\"og:site_name\" content=\"Raleigh Moving News\" \/>\n<meta property=\"article:published_time\" content=\"2026-07-13T07:34:54+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/raleighmovingnews.com\/wp-content\/uploads\/2026\/07\/98e1f6098ea8cd624b8a51bc049d30b6.webp\" \/>\n\t<meta property=\"og:image:width\" content=\"1920\" \/>\n\t<meta property=\"og:image:height\" content=\"1792\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/webp\" \/>\n<meta name=\"author\" content=\"admin\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"admin\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"6 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/raleighmovingnews.com\\\/?p=5809#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/raleighmovingnews.com\\\/?p=5809\"},\"author\":{\"name\":\"admin\",\"@id\":\"https:\\\/\\\/raleighmovingnews.com\\\/#\\\/schema\\\/person\\\/eda87157c0d9ccdbb002a999547a6a60\"},\"headline\":\"UNC research contributes to new drug for rare condition; 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