Posts by: Terry Jo Bichell

Terry Jo Bichell

Terry Jo Bichell is a neuroscientist researching biomarkers and outcome measures for severe rare genetic neurodevelopmental disorders and is the mother of an adult son with Angelman syndrome.

September 10, 2020September 3, 2020

Give Up Hope? Wrong Prescription, Doc

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

Hope is a treatment that works for any disease. Why don’t doctors understand that? When my son, Lou, was diagnosed with Angelman syndrome 20 years ago (wow, that was ... Read more

July 16, 2020July 13, 2020

Lou Needs a Unique Identifying Number, Too

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

We already have social security numbers, dates of birth, addresses, license plates, heights, weights, and ICD-10 codes. Isn’t that enough? No. It just plain isn’t enough for people with ... Read more

June 25, 2020June 23, 2020

Lou’s Leg Has Been Broken for Over a Year

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

May 14, 2020May 13, 2020

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

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

April 17, 2020April 17, 2020

Should Dave Open the Refrigerator? RAREwithCOVID Can Help Decide

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

We have a problem: My husband, Dave, is a surgeon. Normally, we are proud that his long hours go toward an undeniably good cause: to save the lives of ... 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

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

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