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Tapio
- Male
- Minneapolis, MN
- United States
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Tapio's Discussions
GSK Phase III Exon Skipping Trial in the States This Fall?
Started this discussion. Last reply by Mindy Mar 28, 2011. 4 Replies 0 Favorites
Prosensa Phase III
Started this discussion. Last reply by cheryl cliff Jan 26, 2011. 18 Replies 0 Favorites
Cialis to be tested on becker men as a possible treatment against muscle damage
Started this discussion. Last reply by neeraj Mar 25, 2010. 1 Reply 0 Favorites
Tapio's Page
Latest Activity
Tapio replied to RAKTIM SINGH's discussion Results of Prosensa’s Extended Phase I/II Exon-skipping Trial in Duchenne Muscular Dystrophy Published in the New England Journal of Medicine"WebMD has a pretty good article on this as well.
http://www.webmd.com/news/20110323/new-muscular-dystropy-treatment-offers-hope
Here's a paragraph from the article that got my attention:
Three of the patients improved their walking…"
Tapio replied to Tapio's discussion GSK Phase III Exon Skipping Trial in the States This Fall?"I'm not sure, but my understanding is the IND was filed and the FDA asked for further information. That information was provided and GSK is now expecting a reply from the FDA next month. If all goes accordingly they should be on track to begin…"
Mindy replied to Tapio's discussion GSK Phase III Exon Skipping Trial in the States This Fall?"Can you ask them when they expect the IND to be opened? Has it been filed yet?"
Tapio replied to Tapio's discussion GSK Phase III Exon Skipping Trial in the States This Fall?"I received this update yesterday:
As you are aware, GSK is working with FDA to provide the information they have requested with the intent of having the partial clinical hold lifted. We are on track to receive a reply from the FDA next…"
Tapio posted a discussionGSK Phase III Exon Skipping Trial in the States This Fall?
I received this forward a couple weeks ago from our genetic counselor at the U of MN. It was written to her from the University's Clinical Research Coordinator. Hello,I spoke with Marlene Jordan this afternoon regarding the GSK exon skipping study. Right now the timeline consists of us getting the final protocol in June, investigator’s meeting in August with the hope to screen the first subjects in September (dependent on site IRB and contract approval). She said this information is okay to…See More
cheryl cliff replied to Tapio's discussion Prosensa Phase III"In the countries where clinical trials are moving forward, does anyone know if there is an agreement with the pharma (GSK in this case) to allow trial participants to continue on the exon skipping meds AFTER completion of the trial? "
Tulika replied to Tapio's discussion Prosensa Phase III"Well I would personally still participate in the trial even if the toxicity issues are known. I know that managing the kidney and liver is still possible as compared to a body wide loss of muscle tissue.
A risk vs benefit case should…"
Profile Information
- About my family:
- We are a family of 5 living in Minneapolis, Minnesota. My wife and I have 2 daughters and a son. Our son, Jack, was diagnosed in October, 2008 with DMD.
- Name(s) of child(ren)/individual(s) with Duchenne:
- Jack
- Age(s) of child(ren)/individual(s) with Duchenne:
- 4-6
- City and State:
- Minneapolis, Minnesota
Tapio's Photos
Comment Wall (8 comments)
- At 9:52am on September 21, 2010,
Shellie Buriak said… - It was nice to meet your beautiful family this last weekend. Hope you had a good time.
- At 10:13pm on September 12, 2009,
Jennifer Shumsky said… - Hi Tapio,
Obviously I got your message a bit late on the support meeting today. We have not really found the meetings something we are able to make it to yet. It is so far away from Shakopee to be that early in the morning and we would have to find a baby sitter for our daughter. I have spoken a couple time with Kelley to ask why they can't offer sibling care as an option. That was available in the past at support groups and was a big help. We would love to get together with you all some other time though, with kids or without. We try to do things with Jack and Terry Kirley also, You met Terry with us at the previous MDA meeting and they may have been at the meetings today. We could certainly include them in any get together if you would like.
I hope you are all doing well! I look forward to connecting with you and Anneke again!
- At 6:54pm on March 30, 2009,
Rebecca B said… - Hi,
I am new to this site as I am from the UK.
I am mom to George, age 5, with DMD. I have some amazing friends who are cycling 20,000 miles for Duchenne. Starting in Halifax and cycling via Augusta and Rochester, Buffalo, Chicago, Mineapolis...Vancouver down to SF, LA and then all the way down to Argentina.
Please join the group "Cycle the Americas". I think they will be cycling near you - if are interested in finding out more or meeting them on their journey (they really want to meet local communities and DMD families) please get in touch.
I spend every spare second campaigning for research and awareness of DMD - would be great to have you on board with this adventure!
Best wishes
Rebecca Bellinger
www.cycletheamericas.org
- At 10:45pm on March 18, 2009, Jennifer Shumsky said…
- Hi Tapio! My husband Frank and I met you and your wife at the MDA presentation at the Shriner's Hospital a few months ago. I added her as a friend here also. I'm happy to see you here also. My husband has asked about you a few times to see if I knew how you were doing. It's affects dad's so differently than us mom's at times. We would love to get together some time with the two of you, but if you would like to have "man/dad talk" anytime my husband's email is fshumskyiv@comcast.net he would welcome any contact from you. He doesn't really do to much on here, doesn't even have his own account. Take care and I hope you are all staying healthy! God Bless!
- At 8:07pm on November 2, 2008,
Amy Wickert said… - Sorry to hear about your son. I am glad you found this site. It sure helped me over the last year or so. Hang in there!!
- At 11:16pm on October 28, 2008,
Sharyn Thompson said… - I am sorry to hear about Jack's diagnosis. The emotions you must be feeling are also still so raw in my mind. Since we are unable to (somewhat) control our sons' destinies, all we can do is fight! My husband and I are not going to go down without a fight - our guns are blazing and we will do whatever it takes to find a cure. This especially has been the way my husband has coped with the news of DMD finding its way into our lives. He cries and he fights. He spends many hours on the computer and the phone, trying to get financial support off corporations, friends, and friends of friends to fund research into finding a cure. If we all did this, we might be that much closer to saving our sons!
Tapio, we are all here for you and for your family. Many of us have been here for years, so if you need advice or a shoulder to cry on, you are in good company.
Sharyn.
- At 10:48pm on October 26, 2008,
Kari said… - Welcome Tapio to PPMD Community. Sorry to hear of your recent diagnosis, but you must know you came to the right place.
- At 5:04pm on October 25, 2008,
Julie Garcia said… - Hello,
I just read you recently learned of your son's condition. I am so sorry for your son's diagnosis. I hope this site helps to guide you in a better future for your son.
Please take care,
Julie
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Events
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Paint for Peyton to end Duchenne
June 8, 2012 from 6:30pm to 7:30pm – Spirited Art
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