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Subject :First ever BMD conference..
2010-03-03 15:12:38
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Subject :..
2008-12-17 00:47:45
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| Roxanne |
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| All Star |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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Hi Kevin, This is very exciting for the BMD community! There's a number of areas I would like to hear about at this Conference.
1st the very most important question. When and what treatments will be available for BMD folks with in-frame mutations? Since most BMDers are in-frame. Most research (for all good reason and I fully understand why) are for those boys who are out of frame (duchenne) exon skipping, gene therapy etc. These are possible treatments to bring those out of frame back in-frame,so the result will be Beckers and hopeful a mild beckers. What about the boys who are outliners with in-frame mutation? this type of therapy will not help these boys.
2. Excerise and BMD - my son who is 9 is still very mobile and active. So should I limit his activity and try to preseve his muscles? We know once muscle is lost it's gone forever and will not come back. It's really difficult to tell your 9 year old boy he shouldn't run or jump and play floor hockey with his friends. I have not limit his activity but wondering if i'm doing more damage by not?
3. Pulmonary function test/sleep study. I'm wondering when these tests should be performed? My son was diagnosed almost 2 years now and hasn't yet had these test.
4. Supplements. Should our boys take supplements? If so, what supplements would be most beneficial? My son does not take any supplements at this time.
These are the most important topics for me at this time. Thank you :)
Roxanne
mom to Nicholas age (9) with BMD. |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :..
2008-12-17 01:11:43
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| Roxanne |
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| All Star |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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Hi again, I could on for days with my questions... :) Anyway I have one other that I think is very important to bmders. This may answer my very 1st question.
I would like to hear more about the progress that being made with Summits (UK base company) drug for upregulation of utrophin... SMT 1100. I think clinical trials are set to begin for this drug in 2009. I would love to know when this drug will be available for use? This drug gives me so much hope for my son's future. I hope I'm not disappointed after phase I/phase 2 trials are complete. Keeping all fingers crossed on this one. |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :..
2009-01-05 10:35:56
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| Meisa |
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| Experienced |
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Joined: 2007-11-14 11:37:47
Posts: 39
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I'd like to know if a drug is proven effective in a country outside of US, how can it be expedited through approval in the US? I know MD is an orphen indication and those drugs are approved faster but how does it work if a drug is from a company outside of US. |
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Subject :..
2009-02-05 11:25:22
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| kgoodfellow |
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| All Star |
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
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Here's some early info on the conference later in the year.
Speakers committed so far:
Brian Tseng M.D.-Neurologist/Researcher Boston Mass (MD Specialist)
Kevin Flanigan M.D.-Geneticist/Researcher University of Utah (MD Specialist)
Beth Mcnally M.D.-Cardiologist University of Chicago (MD Specialist)
Peter Kang M.D.-Neurologist Children's Hospital Boston - BMD Research Updates
Annie Kennedy - VP MDA
Plus some other BMD patients and advocates.
Kevin |
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K. Goodfellow |
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Subject :This sounds great!..
2009-02-11 03:06:08
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| bstephenson |
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Joined: 2007-02-20 17:57:39
Posts: 11
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Kevin,
This sounds like a great idea! Let me know how I can help. I definitely want to attend. |
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Subject :Conference..
2009-02-11 06:48:49
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| Rhonda Bliss |
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| Experienced |
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Joined: 2007-02-27 08:21:26
Posts: 35
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I'm just over an hour from Boston Children's and will be planning to attend.
If anyone needs someone local to help with travel arrangements, DO NOT HESITATE TO CONTACT ME. I mean it!
Rhonda Bliss
Rhonda@cnhesinc.com |
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Warmly
Rhonda
Mom to Aaron-(exon 48 deletion) age 10 Dirtbike rider & video game whiz! |
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Subject :BMD Info..
2009-02-17 11:41:26
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| kgoodfellow |
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| All Star |
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
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Hey Folks
Here's the first flier on info about the conference. Hope you all can make it.
Kevin |
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K. Goodfellow |
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Subject :..
2009-03-08 07:30:24
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| moeschen |
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| Newbie |
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Joined: 2009-03-08 07:26:40
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Hey guys-
Of course I will be there.
Is everyone going to the PPMD conference in Atlanta in June?? |
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Don't let today slip away. |
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Subject :..
2009-03-11 03:15:41
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| Roxanne |
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| All Star |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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I'm interested to know more about Justin Fallon and Biglycan. |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :..
2009-03-13 11:02:20
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| brandonsmom |
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Joined: 2009-01-11 01:21:29
Posts: 19
Location: Gardner, Mass |
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count me in. It's nice to see that my son's doctor is one of the speakers.
Sherri
Brandon (7) BMD, Joshua (5) BMD ? |
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Sherri
Brandon 8, Joshua 6
both w/ BMD
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Subject :..
2009-03-25 08:27:37
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| NicksMommy |
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| Experienced |
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Joined: 2009-01-30 02:28:05
Posts: 22
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Since we are the parents of a young child with BMD, should we come without him or bring him with us? Just curious.
I am very excited about this opportunity and looking very forward to it. |
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Stacy |
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Subject :We will be attending..
2009-03-25 08:52:15
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| Evans' Mother |
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| Experienced |
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Joined: 2008-03-26 04:43:09
Posts: 37
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We will be coming to from Miami to the conference. We will be seeing Dr. Peter Kang the day before the appointment. Hope to see you all there. |
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Subject :..
2009-03-25 14:46:40
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| kgoodfellow |
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| All Star |
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
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Everyone is invited to the conference..... |
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K. Goodfellow |
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Subject :..
2009-03-26 03:37:45
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| brandonsmom |
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Joined: 2009-01-11 01:21:29
Posts: 19
Location: Gardner, Mass |
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HI Evan's mother,
How do you like Dr. Kang? He is my son Brandon's doctor too.
Sherri |
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Sherri
Brandon 8, Joshua 6
both w/ BMD
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Subject :..
2009-03-26 04:01:34
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| ilj |
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| Ninja |
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Joined: 2008-11-12 07:36:55
Posts: 65
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I won't be able to go, but can people maybe get a transcript of what is said, or at least post some notable points on what is discussed at the meeting? I am interested. |
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Subject :last date to RSVP?..
2009-03-27 10:48:31
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| sethsmom |
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| Experienced |
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Joined: 2007-03-24 09:44:07
Posts: 26
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I want to go, but my travel schedule for work can be chaotic. Does anyone know when is the latest date to RSVP? It looks like a great conference.
Thanks |
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Subject :..
2009-04-13 22:56:12
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| nista |
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Joined: 2007-02-27 22:28:09
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One thing I often think about is if researchers and doctors in for example the US are in contact with MD-doctors/researchers in other countries. From what I have experienced with the doctors I have been in touch with in Sweden this is not the case. When reading this forum, I am under the impression my doctors have no clue of what is going on in the rest of the MD-world. Is there a global community for researchers and doctors? |
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Subject :Bommer....
2009-04-14 02:46:06
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| jonas.sjodin |
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Joined: 2007-04-09 19:40:46
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I won't be able to come, but I hope there will be some good info here later on :) |
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Subject :..
2009-04-14 15:08:04
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| kgoodfellow |
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| All Star |
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
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We are looking into doing a webcast of the conference so that everyone can watch it over the internet. I'll let you know if/how this works out.
Kevin |
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K. Goodfellow |
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