Angelman Syndrome News Columns

June 25, 2020June 26, 2020

Lou’s Leg Has Been Broken for Over a Year

Angelman Syndrome News Columns

My son Lou’s leg has been broken for 18 months. It must hurt like crazy. If I had a broken leg even for a day, I would surely be crabby, ... Read more

June 19, 2020June 19, 2020

This Is What Keeps an Angel Mom Up at Night

Angelman Syndrome News Columns

Three things keep me up at night: worrying that my daughter’s seizures will return, thunderstorms, and a waning gibbous moon. This past month, we hit the trifecta and experienced all ... Read more

May 22, 2020May 22, 2020

This Year Has Gone to the Dogs

Angelman Syndrome News Columns

Since 2020 has gone to hell in a handbasket, it’s necessary to step away from the 24/7 news cycle. I don’t want to focus on the virus. Instead, I declare ... Read more

May 14, 2020May 15, 2020

The Quarantine Quarterhour: A Gig, a Hot Meal, and a Nonverbal Co-host

Angelman Syndrome News Columns, COVID-19 Columns

This is not a story about COVID-19. It is about Angelman syndrome and a daily jazz show, but the coronavirus does make an appearance. If it weren’t for Angelman syndrome, ... Read more

February 21, 2020May 6, 2020

My Angel Is Becoming More Independent

Angelman Syndrome News Columns

For the longest time, my daughter’s motto was, “I may not know where I’m going, but I want to get there fast.” Jessie wore overalls as a kid, which gave me ... Read more

February 13, 2020May 6, 2020

Researching New Therapies: Can We Learn to Set Broken ‘Brain Bones’?

Angelman Syndrome News Columns

When my son was diagnosed with Angelman syndrome 20 years ago, I believed that we would find a cure. Lou had severe developmental delays and epilepsy. In 2000, the genetic ... Read more

January 9, 2020May 6, 2020

My Son Is Not Your Guinea Pig

Angelman Syndrome News Columns

Everybody wants my son’s cerebrospinal fluid. My 20-year-old son, Lou, has Angelman syndrome from a deletion of genes on his maternal 15th chromosome. The lack of those genes makes it ... Read more

November 15, 2019May 6, 2020

With Our Daughter at Camp, We Rediscovered the Joy of Date Night

Angelman Syndrome News Columns

For many kids, September typically means it’s time to go back to school. But for my daughter, Jessie, it was a continuation. Jessie was fortunate to have a year-round program, ... Read more

October 18, 2019May 6, 2020

Angels Need to Learn Proper Manners, Too

Angelman Syndrome News Columns

If my daughter, Jessie, doesn’t like what she hears, she will walk away. When her boyfriend — more of a buddy than a romantic interest — gets frustrated, he raises ... Read more

September 20, 2019May 6, 2020

Angels Change Over Time

Angelman Syndrome News Columns

I was on sabbatical this summer and didn’t write for BioNews Services or my blog. Sometimes you don’t realize how burned out you are until you stop. But the longer ... Read more