Canadian Association of Pompe
December 2015 edition of CAP News.
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Happiness and good health in 2016!

Meet Trevor!

Trevor was a floppy baby, what I mean by this, is he felt like one of those dolls that are full of water. He had the weight but no muscle tone. His skin felt like velvet. He could not bare weight on his legs they would buckle under him. The specialist thought Trevor had Duchenne Muscular Dystrophy, a muscle biopsy was ordered. The muscle was examined and with what was seen a second muscle biopsy, skin biopsy, and liver biopsy was ordered. The result came back that Trevor had, Pompe Disease, Trevor was ten months old... more

Newborn Screening

Ten Years of Newborn Screening for Pompe Disease

November 18, 2005 was a special day. It was the day that the first patient, identified with Pompe disease by newborn screening (NBS), was born in Taiwan. She was fortunate that she was born in a hospital where the pilot program started only eighteen days before she was born, and that she was born after many people worked tirelessly to develop a diagnostic method suitable for NBS... more

Previously Unknown Truths about the Therapeutic Benefits and Effects of Massages on the Human Body Revealed

Mark Tarnopolsky, a researcher specializing in neuro-metabolism from the Mcmaster University in Hamilton, Canada, was such a skeptic of this newly found mechanism until he himself along with colleagues performed comprehensive laboratory tests to establish the validity of this newly found theory.

Rare Disease Day 2016

29 February 2016 marks the ninth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the slogan Join us in making the voice of rare diseases heard.

Caregivers Need Care Too!

As hard as it is for those of us that are affected by a rare disease, it's also hard to be a caregiver. We owe a lot to these people, sometimes family, sometimes not.

About Pompe

Pompe Disease is a neuromuscular disorder that causes muscle weakness in persons of any age. It affects everyone differently but, in general, causes progressive muscle weakness, especially of the proximal muscles. This is why the patient's breathing is often affected. Patients that are affected as infants can also have organ involvement. Early diagnosis is critical. more


About the Canadian Association of Pompe

The Canadian Association of Pompe was established to help persons in Canada, and elsewhere, become familiar with Pompe disease, and to support persons with Pompe disease.

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