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COVID-19 Advice for A-T Families

Dear A-T Families, The A-T Children’s Project is eager for families of children and adults who have A-T to be as informed as possible as we all plan for the emerging COVID-19 virus outbreak. We strongly suggest that A-T families review the information that is provided by the Centers for Disease Control and Prevention. It … Read More

Rare Disease Day 2020

We are excited to announce that we are selling six new shirts for Rare Disease Day 2020,  coming up on February 29th. We’ve chosen the Be Brave, Be Strong, Be Proud slogan this year as a testament to the fortitude of A-T families. The shirts are available starting today in both grey and white at … Read More

Thanks to you, we did it!

  Thank you for your amazing generosity on #GivingTuesday this year! It’s astounding what can happen when we pull together to help find a cure for A-T. For #GivingTuesday, we started off slowly, but a surge of kindness just before the deadline enabled us to maximize the $50,000 matching gift, doubling the impact of your … Read More

A Clinical Trial of Nicotinamide Riboside (Niagen®) in A-T

Michel Willemsen, MD, PhD and his colleagues at Radboud University in the Netherlands have begun an “open-label” clinical trial of nicotinamide riboside in children and young adults with ataxia telangiectasia (A-T). With financial support from the A-T Children’s Project, Dr. Willemsen’s team is currently enrolling 32 individuals with A-T in the Netherlands in a four-month … Read More

FDA Approves Clinical Testing of an Amino Acid in A-T

IntraBio, a UK-based biopharmaceutical company, has received approval from the US Food and Drug Administration to run a clinical trial in patients who have Ataxia-Telangiectasia (A-T). The company will test their investigational new drug, IB1001, an orally-administered version of N-Acetyl-L-Leucine, to evaluate its safety and efficacy in improving symptoms, functioning, and quality of life. N-Acetyl-L-Leucine … Read More

How Do Cells Change and Die in the Human A-T Brain?

The A-T Children’s Project has funded the laboratories of E. Alice Lee, PhD and Christopher Walsh, MD, PhD of Boston Children’s Hospital and Harvard University to examine how DNA damage accumulates and how genes are turned on and off differently in brain cells obtained from post-mortem patient brain tissue samples donated by A-T families. Children … Read More

2019 Could Change the Game for A-T

Dear Friends, The start of the new year is less than 24 hours away, and for families impacted by A-T, 2019 promises to be a year unlike any other. As you may know from our recent updates, we’re on track to deliver a gene therapy drug (an antisense oligonucleotide) to an 18-month-old girl with A-T … Read More

Liver Disease in A-T

Liver problems, such as non-alcohol fatty liver, fibrotic changes and even non-alcoholic cirrhosis, have been seen as children with A-T become adults. In addition, liver disease has been associated with insulin resistance, which is also seen in A-T patients. To better understand liver disease in A-T by investigating the correlation between insulin resistance, inflammation and … Read More