Comment

Comment by Don Cooley on January 30, 2012 at 10:43pm

Does anyone know when & where the 2012 Becker MD Conference is being held. We have never attended before however would like to this year. Kathi Cooley

Comment by Brooke Wagoner on January 30, 2012 at 12:55pm

Hello everyone! I'm new to the group and I'm actually the sister of the affected. He is 15 now and he hasn't been under any kind of treatment since he was 7. My Grandfather lived til the age of 75 passing n12/25/10. I'm really hoping to find some support/advice to convince my mother & stepfather that he won't be a "guinea pig" and that their are treatment options such as physical therapy etc. I'm worried for my brother who's inactivity, I fear, will be his downfall. He doesn't participate in any kind of sports nor is he active in anything else. Please help me!!! How do I approach this with them?    

Comment by Jeff Trecha on December 10, 2011 at 5:48am

HI Anne:

Our prayers are with your son and your family.  There is a professor from the University of Western Australia named Steven Wilton who is an expert on MD.  He travels to the US every year to be at the DMD conference.

I have meet him and you may want to try to contact him.  He will assist and give you direction as to who you can meet and discuss your son.

God Bless and Merry Christmas

Jeff

Comment by Annie on December 10, 2011 at 3:44am

Hi

Our son has just been diagnosed with MD we are waiting further tests from the biopsy but not duchenne, probably outlier or severe BMD - prediction is that he may need wheelchair assistance at 16- 18 years of age.

Such a relief to find some people that are in the same boat as us!

We live in Melbourne Australia and looks like most of you are from USA

Support from anyone anywhere would be greatly appreciated - we know no one with BMD!

 

Comment by Kelli Blakeslee on July 7, 2011 at 5:17pm

Is anyone going to the BMD conference in LA this August?  If not and you have specific questions regarding Beckers, please let me know.  There will be plenty of experts on hand.  There is a plethora of information on Duchenne but not on Beckers.  I'm always researching for my son and passing on the information to my son's school.

Comment by Jessica on August 4, 2009 at 5:04pm

They are also urging everyone to register with duchenne connect, and the utah study. This will show that there is a large number with md and that the researchers, pharmaceutical companies, and government should help fund.

Comment by Jessica on August 4, 2009 at 5:03pm

They did mention Utrophin after the PTC drug, will probably be the fastest treatment. The problem it takes so much money between 700 - 900 million dollars to pass a drug through the FDA. The government only gives md about 70 million. We have to hope for orphan drug funding, and raising awareness.

Comment by Tamara "Michael's Mulisha" on August 3, 2009 at 7:38pm

Jessica- what did they say about Utrophin? Is there a recap on this meeting where I can read on it?

Comment by Jessica on August 3, 2009 at 5:45pm

I attended the conference. It was very informative, Utrophin was a big topic. Dr. Peter Kang from Boston Childrens was also requesting access to any muscle biopsies that anyone has had. It was wonderful to meet so many affected also. It was a very positive and up lifting experience.

Comment by Tamara "Michael's Mulisha" on July 30, 2009 at 1:17am

Thanks Roxanne! I obviously cant go on this short notice but would love feed back from anyone going. As far as we know, the only thing that can help Michael is Utrophin. But, it got pulled out of trials and I have no idea where it is now. Looking forward to hear anything after this conference.

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