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Coco Henry left a comment for Jacobs Mommom
was nice to hear from you.   I sure wish I had heard from you sooner.  I am sad to say that Dennis went to live with Jesus in heaven on June 27.  He died at home and I was not prepared for it. He had not been feeling well…
Nov 21, 2011
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Pat chipman left a comment for Jacobs Mommom
hey Donna - christopher is doing well...stubborn which is working well for him :)  how is Jacob?  have not really been on the website much as i am really sure how to get around on everything :)  was that you from berk?
Nov 10, 2011
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John C. Corrado left a comment for Jacobs Mommom
Hi Jacobs Mommom,   Thanks for sending me a note.  I'm not aware of any family in the Lansdale area...but there's no doubt a relation.  I'd recenlty been made aware that my father, from MA, used to drive his…
Nov 10, 2011
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Drop for Duchenne Golf Ball Drop set for Saturday, October 23rd, 2010

Okay so we have set our date for the Drop for Duchenne Golf Ball Drop to be on Saturday, October 23rd. I was thinking that it would be really great if others could organize them and we could all do them on the same day. Thousands of golf balls being dropped at one time to Cure Duchenne! Any Thoughts?See More
Discussion posted by Jacobs Mommom Apr 23, 2010
2 Comments
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U research team's findings shet light on Duchenne muscular dystrophy

U research team’s findings shed light on Duchenne muscular dystrophyA research team led by University of Minnesota biochemist James Ervasti, Ph.D., is yielding promising results in the search for a treatment for Duchenne muscular dystrophy, the most common form of muscular dystrophy in children.Duchenne, which affects only boys (though girls can be carriers), is caused by a genetic mutation preventing the body’s production of dystrophin, a protein crucial to maintaining muscle structure.…See More
Discussion posted by Jacobs Mommom Mar 10, 2010
2 Comments
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Online Chat with Annemieka Aartsma-Rus Part 2 at Amsterdam to the world

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January 9, 2010 from 9:30pm to 10:30pm
Part 2 "Overview of genetic approaches for Duchenne muscular dystrophy"Chat online with Dutch scientist Annemieka Aartsma-Rus giving us lucid explanations of genetic research and question time. Part 1 focused on exon-skipping but Part 2 will focus on the other approaches. Of course times vary – please use one of the following cities as a guide to working out your local time or check World Time.Amsterdam: Saturday…See More
Jacobs Mommom is attending Deb Robins's event Jan 4, 2010
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For those of you who have boys that have a hard time taking their pills check this out

I have a friend who said when her son was young she used this and it works great.http://www.oralflo.com/See More
Discussion posted by Jacobs Mommom Nov 30, 2009
1 Comment
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Biomarins Utrophin Upregulation phase 1 trial slated for first quarter of 2010

From Biomarins 3rd quater report Reply to this PostReply with Quote[Delete this Thread]---------------------------------------------------------------------------------- BMN-195 - Utrophin upregulator for Duchenne Muscular Dystrophy:BioMarinis in the final stages of preparing the regulatory filing and expectstoinitiate a Phase I trial by the first quarter of 2010. BMN-195 is anorally available small molecule which may upregulate utrophin, apotential substitution for the missing dystrophin…See More
Discussion posted by Jacobs Mommom Oct 29, 2009
17 Comments

Profile Information

About me:
I am the proud Mommom to 9 year old Jacob Shive and his little sister Meredith 4 years old.
Name(s) of child(ren)/individual(s) with Duchenne:
Jacob Shive
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City and State:
Doylestown
Country:
PA

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At 9:37pm on November 20, 2011, Coco HenryCoco Henry said…

was nice to hear from you.   I sure wish I had heard from you sooner.  I am sad to say that Dennis went to live with Jesus in heaven on June 27.  He died at home and I was not prepared for it. He had not been feeling well and I took him to his doctor and also called his cardiologist .  No specific co's, just not himself.  It was aweful.  I wish now I would not have took his doctors word but went with my gut feeling that something was not right.  Although Dennis only lived with us 18 months, he was our family's world.  Every day revolved around him.

At 1:21pm on November 10, 2011, Pat chipmanPat chipman said…

hey Donna - christopher is doing well...stubborn which is working well for him :)  how is Jacob?  have not really been on the website much as i am really sure how to get around on everything :)  was that you from berk?

At 10:33pm on November 9, 2011, John C. CorradoJohn C. Corrado said…

Hi Jacobs Mommom,

 

Thanks for sending me a note.  I'm not aware of any family in the Lansdale area...but there's no doubt a relation.  I'd recenlty been made aware that my father, from MA, used to drive his mother to the Lansdale area fairly regularly. I'm trying to learn more about that and will keep you posted if I establish a connection.

We've been in PA for 9 years now but the balance of my family are all up in MA.

At 3:46pm on April 25, 2011, AmyAmy said…
Nice to meet you.
At 12:56pm on August 1, 2010, David G EvansDavid G Evans said…
Hi Jacobs Mom mom

Hi this is David Evans

I was wondering if we could get together sometime, maybe soon
At 3:21pm on July 28, 2010, David G EvansDavid G Evans said…
Hi Jacobs Mom mom

Hi this is David Evans

I was wondering if we could get together sometime. I thought maybe we could meet at a park. My phone number is 610-693-6813.
At 11:43am on July 6, 2010, David G EvansDavid G Evans said…
Hi Jacob

Hi this is David

I was wondering if we could get together sometime, maybe soon.
At 10:15am on June 15, 2010, David G EvansDavid G Evans said…
Hi Jacob

my phone number is (610)-693-6813
At 12:17pm on June 13, 2010, David G EvansDavid G Evans said…
Hi Jacob

Hi this is David i got your message. You are about an hour and a half away from were i live.
At 10:02am on February 16, 2010, Jacobs MommomJacobs Mommom said…
Are you going to DC this weekend? I'm going but can only be there for Sunday and Monday because my boss sprung it on me last week that he is going to FL on Tuesday!

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