Angelman Syndrome News Columns

September 10, 2020September 10, 2020

Give Up Hope? Wrong Prescription, Doc

Angelman Syndrome News 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 quick), ... Read more

August 21, 2020August 24, 2020

Summer Challenges and Zoom Adventures

Angelman Syndrome News Columns, COVID-19 Columns

As of this writing, 140 days remain until 2021 — but who’s counting? Within two weeks, my husband had two ER visits, one resulting in a hospital stay. A tropical ... Read more

August 21, 2020August 28, 2020

Summer Challenges and Zoom Adventures

Angelman Syndrome News Columns, COVID-19 Columns

As of this writing, 140 days remain until 2021 — but who’s counting? Within two weeks, my husband had two ER visits, one resulting in a hospital stay. A tropical ... Read more

July 24, 2020July 24, 2020

Negotiating With a Manipulator

Angelman Syndrome News Columns

It was 5:30 a.m. and Jess needed to use the bathroom. Instead of returning to her room, she exited stage right. The sun was rising and that was all the ... Read more

July 24, 2020August 28, 2020

Negotiating With a Manipulator

Angelman Syndrome News Columns

It was 5:30 a.m. and Jess needed to use the bathroom. Instead of returning to her room, she exited stage right. The sun was rising and that was all the ... Read more

July 16, 2020July 16, 2020

Lou Needs a Unique Identifying Number, Too

Angelman Syndrome News 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 rare ... Read more

July 16, 2020August 28, 2020

Lou Needs a Unique Identifying Number, Too

Angelman Syndrome News 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 rare ... Read more

June 25, 2020August 28, 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 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, 2020August 28, 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

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, 2020August 28, 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 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, 2020August 28, 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

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