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Girl in Motion | Living with Pompe Disease

June 5, 2015 10:55 am. I received a surprise in the mail from my friends at Genzyme the other day. They used my picture on the cover of their Pompe Perspectives DVD. How cool is that? You can watch the videos online at http:/ pompe.com/. April 15, 2015 9:09 am. Today is the second annual International Pompe Day. To celebrate, the International Pompe Association has launched a campaign called “Pause for Pompe”. From their website:. What is the Pause for Pompe? April 2, 2015 12:34 pm. Meeting in real life.

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Girl in Motion | Living with Pompe Disease | pompegirlinmotion.com Reviews

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June 5, 2015 10:55 am. I received a surprise in the mail from my friends at Genzyme the other day. They used my picture on the cover of their Pompe Perspectives DVD. How cool is that? You can watch the videos online at http:/ pompe.com/. April 15, 2015 9:09 am. Today is the second annual International Pompe Day. To celebrate, the International Pompe Association has launched a campaign called “Pause for Pompe”. From their website:. What is the Pause for Pompe? April 2, 2015 12:34 pm. Meeting in real life.

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2 pompe famous

3 sdot;

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6 posted in

7 pompe

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about alison,pompe famous,sdot;,leave a comment,alison,posted in,pompe,pause for pompe,invisible connections,1 comment,friends,research,pompe marathon,exercise,happy new year,using your resources,real,strengths for strength,discipline,responsibility

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Girl in Motion | Living with Pompe Disease | pompegirlinmotion.com Reviews

https://pompegirlinmotion.com

June 5, 2015 10:55 am. I received a surprise in the mail from my friends at Genzyme the other day. They used my picture on the cover of their Pompe Perspectives DVD. How cool is that? You can watch the videos online at http:/ pompe.com/. April 15, 2015 9:09 am. Today is the second annual International Pompe Day. To celebrate, the International Pompe Association has launched a campaign called “Pause for Pompe”. From their website:. What is the Pause for Pompe? April 2, 2015 12:34 pm. Meeting in real life.

INTERNAL PAGES

pompegirlinmotion.com

1

Strengths for strength | Girl in Motion

http://www.pompegirlinmotion.com/strengths-for-strength

September 16, 2014 2:32 pm. Recently everyone in my office had to take a StrengthsQuest. Assessment. It is similar to Myers-Briggs, except it identifies your top five strengths. After receiving the results, we attended a workshop on how to use them to our advantage. The context was professional/interpersonal, but I decided to apply the same logic to coping with Pompe disease. My top five strengths are:. Values routine and structure, highly-organized – definitely evident in my exercise program. I take com...

2

Exercise | Girl in Motion

http://www.pompegirlinmotion.com/category/exercise

August 12, 2016 3:10 pm. Since moving to Virginia, I have made several adjustments to my exercise routine as a matter of necessity. Sadly, there are no Zumba classes in my neighborhood; I suppose it is considered passé in this part of the country. Instead I use my fiancé’s rowing machine for cardio. Our modest apartment gym also has a few treadmills and elliptical machines if I want to break from routine. January 22, 2015 10:58 am. My friend Paul McIntosh is an athlete and med student, who recently went ...

3

ERT | Girl in Motion

http://www.pompegirlinmotion.com/category/ert

Life as a lab rat. February 9, 2016 5:30 pm. I have been hit up to participate in six research studies within the past year. Only once have I said no. It’s for the benefit of science, getting one step closer to finding a cure, etc. But I am starting to feel more like a lab rat than a human being. I am hesitant to give that up and risk setbacks. Not to mention the huge time commitment commonly associated with these trials. We are talking about 44 hour observation periods, hourly blood draws, long ...I am ...

4

Pompe Famous | Girl in Motion

http://www.pompegirlinmotion.com/pompe-famous

June 5, 2015 10:55 am. I received a surprise in the mail from my friends at Genzyme the other day. They used my picture on the cover of their Pompe Perspectives DVD. How cool is that? You can watch the videos online at http:/ pompe.com/. Leave a Reply Cancel reply. Your email address will not be published. Required fields are marked *. Next Post →.

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Pause for Pompe | Girl in Motion

http://www.pompegirlinmotion.com/pause-for-pompe

April 15, 2015 9:09 am. Today is the second annual International Pompe Day. To celebrate, the International Pompe Association has launched a campaign called “Pause for Pompe”. From their website:. What is the Pause for Pompe? To read more about the International Pompe Association or to participate in the Pause for Pompe, visit http:/ worldpompe.org/index.php/international-pompe-day/ipd-fundraiser-2015. Leave a Reply Cancel reply. Your email address will not be published. Required fields are marked *.

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June 5, 2015 10:55 am. I received a surprise in the mail from my friends at Genzyme the other day. They used my picture on the cover of their Pompe Perspectives DVD. How cool is that? You can watch the videos online at http:/ pompe.com/. April 15, 2015 9:09 am. Today is the second annual International Pompe Day. To celebrate, the International Pompe Association has launched a campaign called “Pause for Pompe”. From their website:. What is the Pause for Pompe? April 2, 2015 12:34 pm. Meeting in real life.

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