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  • Traveling with a child with Angelman syndrome is easier in the early years January 6, 2026
    After my son, Jude, was diagnosed with Angelman syndrome at 16 months old, I kept hearing the same comment from other seasoned Angelman parents: “Traveling is so much easier when they’re younger.” At the time, I was skeptical. But now that Jude is 3 and has experienced short- and long-haul flights and road trips, I’m […]
  • 6 months of keto diet shows promising trends for Angelman children January 5, 2026
    Following a low-sugar, high-fat eating plan — known as a ketogenic, or keto, diet — may benefit children with Angelman syndrome, though more research is needed to know for sure, according to the findings of a new study from Spain. In the small trial, dubbed DIANE, children with Angelman were assigned to follow a ketogenic […]
  • Angelman syndrome has shaped how we celebrate our son’s birthday December 9, 2025
    Every now and then, I’m reminded that life for my 3-year-old son, Jude, who lives with Angelman syndrome, has unfolded differently from what I imagined. In Jude’s swimming class, I watch his peers advance to higher levels while he stays in the beginner group, as he can’t yet be in a pool without one-on-one support. […]
  • MVX-220 Angelman gene therapy trial enters first human testing December 1, 2025
    The first patient has been dosed in a Phase 1/2 clinical trial testing MavriX Bio’s experimental gene therapy, MVX-220, in people with Angelman syndrome. The ASCEND-AS trial (NCT07181837) will assess the safety and efficacy of the gene therapy in 12 children and adults with Angelman syndrome caused by specific UBE3A-related genetic variants. The study, the […]
  • Recognizing the importance of exercise for Angelman caregivers November 11, 2025
    After my son, Jude, was diagnosed with Angelman syndrome in April 2024 at 16 months, taking time to focus on my fitness felt like a luxury. Intense emotional processing took over as I cycled through fear, hope, guilt, and exhaustion. Every week was filled with new information, new appointments, and new emotions to manage. Finding […]
  • When the world forgets our children November 10, 2025
    This article was provided by our partner, the Angelman Syndrome Foundation. It has been reviewed by Bionews for accuracy and relevance. The views and opinions expressed are those of the author and do not necessarily reflect the views of Bionews or Angelman Syndrome News. I’m writing this because I don’t know where else to put […]
  • Dosing begins in broader trial of Angelman syndrome therapy November 3, 2025
    The first person has been dosed in a Phase 3 clinical trial testing GTX-102 (apazunersen), Ultragenyx Pharmaceutical’s experimental therapy, in a broad population of Angelman syndrome patients. The study, dubbed Aurora (NCT07157254), is the second Phase 3 trial of GTX-102 in Angelman patients. The first, called Aspire (NCT06617429), completed the enrollment of 129 children and teenagers with […]
  • The guessing game involved in caring for a nonverbal child October 7, 2025
    My 2-year-old son, Jude, lives with Angelman syndrome and is nonverbal, so I’ve had to become more attuned to the subtle ways he communicates his thoughts and feelings. Sometimes he clearly expresses how he’s feeling, such as by laughing while playing peekaboo, spinning in a sensory swing, or (gasp) listening to farts. Other times, I’ll […]
  • MVX-220 for Angelman syndrome earns FDA fast track status October 1, 2025
    The U.S. Food and Drug Administration (FDA) has granted fast track designation to MVX-220, Mavrix Bio’s investigational gene therapy for Angelman syndrome that is headed into clinical trials. Fast track designation aims to facilitate the clinical development and regulatory review of therapies intended to treat serious conditions with an unmet medical need. The status affords […]
  • Starting seizure medicine has us grappling with anxiety and doubt September 9, 2025
    Two months ago, we took a step I’d been apprehensive of since Jude, my now 2.5-year-old son, was diagnosed with Angelman syndrome at 16 months, in April 2024. We started seizure medicine. We knew seizures were common in people with Angelman syndrome, but the experience still felt surreal when they arrived. Although we educated ourselves […]