Parents and son are all on a path of discovery with Alagille syndrome
Our son Finley was born with Alagille syndrome in 2021. Since then, I’ve been on a journey to learn about his rare disease and…
Alagille syndrome
A boys’ day out brings a welcome sense of normalcy
When I brainstorm column topics, I often find that I lean into the stress and anxiety that come from raising a child with a rare…
Used in Alagille mice, ASO therapy found to improve liver function
An experimental antisense oligonucleotide (ASO) therapy designed to boost production of the Jagged-1 protein — which is known as Jag1 in mice and JAG1 in…
Alagille made us constantly worry about child milestones
Watching your child achieve milestones is one of the most rewarding aspects of being a parent. The joy they exude when learning or accomplishing something…
Keeping that cloud of uncertainty at bay for yet another day
Alagille syndrome is such an interesting condition in that it affects every individual differently. With my 4-year-old son, Finley, who has the syndrome, much…
Why Mexican children with Alagille lag behind in getting proper care
Children in Mexico living with the complex genetic disease Alagille syndrome have limited access to essential care, including confirmatory genetic testing at diagnosis and,…
Monitoring our son’s nutrition can be extra challenging during travel
Life has been busy in our household. School has been in session for over a month, our oldest son is playing fall baseball, and we…
Livmarli eases Alagille teen’s itch following liver transplant issues
Treatment with Livmarli (maralixibat) quickly and safely reduced severe itching in a 16-year-old boy with Alagille syndrome after his transplanted liver started to malfunction,…
Liver Foundation honors family who turned diagnosis into giving
A family whose experience with biliary atresia led to an effort to help others navigate the challenges of pediatric liver disease is among those being…
ALF unveils network to connect living donors with strangers in need
The American Liver Foundation (ALF) is launching a first-of-its kind national database, called the ALF Living Donor Network, to connect people willing to…
Recent Posts
- New biomarkers may help detect pregnancy-linked liver complication
- Access to food is a survival tactic when your liver needs nutrition
- Belapectin may help reduce liver scarring in those with severe MASH
- Parents and son are all on a path of discovery with Alagille syndrome
- Stem cell therapy may boost liver health in infants with biliary atresia