Columns

February 21, 2020February 20, 2020

My Angel Is Becoming More Independent

Columns, Raising an Angel - a column by Mary Kay

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 ... Read more

February 13, 2020February 12, 2020

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

A Rare Mind - a Column by Terry Jo Bichell, 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 ... Read more

January 9, 2020January 7, 2020

My Son Is Not Your Guinea Pig

A Rare Mind - a Column by Terry Jo Bichell, 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 ... Read more

November 15, 2019November 18, 2019

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

Columns, Raising an Angel - a column by Mary Kay

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 ... Read more

October 18, 2019October 15, 2019

Angels Need to Learn Proper Manners, Too

Columns, Raising an Angel - a column by Mary Kay

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 ... Read more

September 20, 2019September 17, 2019

Angels Change Over Time

Columns, Raising an Angel - a column by Mary Kay

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 ... Read more

August 22, 2019August 20, 2019

Rare Resilience: Is There a Gene for That?

A Rare Mind - a Column by Terry Jo Bichell, Columns

Welcome to Terry Jo Bichell’s “A Rare Mind,” a new Angelman Syndrome News column. About 75 people, mostly women, were in the room at the Washington Marriott Georgetown, listening attentively ... Read more

June 7, 2019June 5, 2019

Familiarity Is the Foundation for Acceptance

Columns, Raising an Angel - a column by Mary Kay

This past weekend was action-packed from front to back. There was Jessie’s last dance of the season, a wedding to which the whole family was invited (doesn’t always happen), ... Read more

May 10, 2019May 8, 2019

Angelman on the Trail

Columns, Raising an Angel - a column by Mary Kay

Last week, on a clear, sunny day, we decided to go on a hike. My daughter Jessie complained every step of the way, and I loved every minute of ... Read more

April 12, 2019April 11, 2019

I’m Learning to Encourage Active Listening

Columns, Raising an Angel - a column by Mary Kay

Jessie took the Goober Grape out of the cabinet and handed it to me. I said, “Oh, you are hungry, I need to find some bread,” and proceeded to ... Read more

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