Jeffrey Kopp Male Saint Louis, MO United States: Favorite

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exon 46-50 deletion

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5 Comments 3 Favorites
Illinois/Missouri Famili…

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Dad's Only

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Run for Our Sons

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Jeffrey Kopp's Discussions

PPMD as Charity of Choice on Amazon Smile

Started Sep 20, 2016 0 Replies 1 Favorite

Do you shop on Amazon? If so, you can donate money to PPMD with every purchase and it won't cost you anything. You just need to set up "The Parent Project for Muscular Dystrophy Research Inc" as your…Continue

Tags: fundraising, smile, amazon, donations, charity

Starting a Nonprofit Organization vs. Private Foundation for Fundraising

Started this discussion. Last reply by bob Sep 17, 2012. 13 Replies 0 Favorites

I've been considering setting up an actual 501(c)(3) nonprofit corporation for raising money for our son's needs and to also funnel more funding to PPMD. I have found similar Duchenne fund websites…Continue

Tags: funds, starting, trust, foundation, organization

Duchenne Updates on Twitter

Started this discussion. Last reply by Jon Moulton May 24, 2011. 7 Replies 0 Favorites

Are any of you guys on Twitter? I've found that following @Duchenne_Tweats,…Continue

Tags: social networking, twitter

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Jeffrey Kopp's Page

Latest Activity

Jeffrey Kopp shared Annie Kennedy's blog post on Facebook

ACTION ALERT: Immediate Action Needed – Revised AHCA Bill Threatens Duchenne Community’s Access to Health Care Coverage

Apr 28

Jeffrey Kopp favorited Laura McLinn's profile

Oct 26, 2016

Michael Bazant favorited Jeffrey Kopp's discussion PPMD as Charity of Choice on Amazon Smile

Sep 21, 2016

Jeffrey Kopp posted a discussion

PPMD as Charity of Choice on Amazon Smile

Sep 20, 2016

0 Comments 1 Favorite

Jeffrey Kopp posted a blog post

CRISPR/Cas9 Gene Editing

We finally have some very promising news for the development of adequate treatment for our boys with mutations requiring double or multi exon skipping!In reading through this article about injecting a fully functional version of the dystrophin gene into the body using a harmless virus, it doesn't mention anything about applicability of multi-exon skipping for DMD mutations in…See More

Apr 27, 2016

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Jeffrey Kopp added a discussion to the group exon 46-50 deletion

CRISPR/Cas9 Gene Editing

Apr 27, 2016

0 Comments 0 Favorites

Jeffrey Kopp replied to RAKTIM SINGH's discussion Multi exon skip

"I emailed Dr. Aartsma-Rus about this just the other day, since our son, Liam, also has the deletion of exons 46-50. Here is her reply: Liam's mutation is relatively common and indeed would need double exon skipping to restore the genetic code.…"

May 31, 2015

Jeffrey Kopp favorited PPMD's blog post Sarepta Therapeutics Announces Plans to Submit New Drug Application to FDA for Eteplirsen for the Treatment of Duchenne Muscular Dystrophy by Year End 2014

Apr 22, 2014

Jeffrey Kopp posted photos

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Dec 17, 2013

Jeffrey Kopp commented on Joseph Steven Burr's photo

Evan and Betty Lou

"Nice! I used to have a '65 Barracuda."

Dec 17, 2013

Jeffrey Kopp favorited RAKTIM SINGH's group exon 46-50 deletion

Sep 11, 2013

Profile Information

About me:: SubGenius Slackmaster, contrarian, misanthrope, free spirit, adventurer, BPSA Rover Scout, outdoor lover, podcast pirate, aging punk, rock'n'roll weirdo, baseball freak, dad.

About my family:: My wife is a carrier of Duchenne Muscular Dystrophy. Two of her brothers were born with the disease. Her oldest brother, John, died of DMD in 1998 at age 30. Her younger brother, Joe, passed away in November of 2012. Our first son was born healthy in 2003, but we we had a second son in February 2010, and DNA testing has shown that he has inherited the disease (he has deletion of exons 46-50). So we are getting a head start on trying to raise money and awareness via PPMD's site for research to ultimately find a cure. Please visit our fundraising page:
http://www.parentprojectmd.org/goto/liamsfund

Name(s) of child(ren)/individual(s) with Duchenne:: Liam Henry Kopp (born Feb. 16, 2010)

Age(s) of child(ren)/individual(s) with Duchenne:: 7-12

City:: Crestwood

State:: Missouri

Our Personal Fundraising Page

http://www.parentprojectmd.org/goto/liamsfund

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Jeffrey Kopp's Blog

CRISPR/Cas9 Gene Editing

Posted on April 27, 2016 at 3:37pm 0 Comments 0 Favorites

We finally have some very promising news for the development of adequate treatment for our boys with mutations requiring double or multi exon skipping!

In reading through this article about injecting a fully functional version of the dystrophin gene into the body using a harmless virus, it doesn't mention anything about applicability of multi-…

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Comment Wall (6 comments)

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At 8:31pm on August 8, 2011, Wyatt's Mommy, Melissa said…: Thanks for requesting our family as a friend on the PPMD site. You're boys are darling. I love Liam's hair, so cute. I have found alot of support and understanding on this site, I hope that you will do the same. We all are here for each other, if you have questions or need to just vent, don't hesitate. Take care.

At 9:14pm on April 15, 2011, Lisa Jones said…: Hi Jeff! Thanks for adding me as a friend. I enjoyed seeing the pictures of your family. Your sons are very handsome. I'm sorry to hear about Liam's diagnosis. Our son was diagnosed at the age of 3 years. He is 14 years old now and to our surprised, he continues to walk with very little use of the wheelchair. Thank you for all of your efforts with fundraising. By any chance are you and your wife planning to participate in the St. Louis Run for Our Son's event on October 23rd? I have registered as a Spirit Runner.

At 4:29pm on March 1, 2010, Christine McSherry said…: Hi Jeff,

The JettRide ll will be coming through St. Louis early August 2010!! We would love to connect with you - please see the site, www.jettride.org

I would also like to send you a packet of information and a copy of the JettRide 2007 movie - my daughter did the ride in 07.

Let me know, we would love to connect and spread awareness about DMD...also to connect FAMILIES together across the countrry!!!!

Let me know asap,

Christine

At 11:19am on November 9, 2009, Dave Welborn said…: Hello! Great to meet you on this site. I was with MDA for many years before leaving in June and and have been involved as a volunteer with the camp program for more than 30 years. I spent many summers with John (and Joe). What great people! John taught me a lot. I'm available to help in whatever capacity I can. Please let me know what I can do. There are many great families in the St. Lousi metro area that also want to stay invovled. Tell Joe, your wife and in-laws I said hello!! Stay in touch and best of everything to you all.

At 11:53pm on October 26, 2009, Wyatt's Mommy, Melissa said…: Hi Jeffrey, Welcome. Congratuations on your baby to arrive in a few months. I'm glad to hear that your brother in law Joe is doing well. Thank your for beginning your fundraising efforts already. Our son, Wyatt, was diagnosed in Jan 09, when he was just 10 months old. Since then my husband ran in the Seattle Run for Our Sons event, and I did a small fundraiser during Coach to Cure MD. Our son is so young still it's hard for us to believe that he has DMD since he shows no signs, at this point. (We didn't know there was a family history until a few months ago) My husband and I decided that we, right now, can raise awareness and hopefully money, like you said, to find a cure. My husband and my father in law both ran the 1/2 marathon last year, This year (June 2010) they have recruited about 25 - 30 people, which is potentially about over 20,000 dollars. I hope we do it. Good luck with fundraising that you plan in the future. And again, congratulations on your "new" son.

Wyatt's Mom, Melissa