Run For Our Sons..Help support PPMD in the Chicago Marathon, Sun Oct 11, 2009 |
I am officially a runner in the Chicago Marathon for PPMD (Parent Project Muscular Dystrophy). I am not a usually a runner at all but, I am determined to do this for my son. I have 6 months to train...
Posted by on Mon, 06 Apr 2009 18:39:00 GMT |
MDA is the Grand Marshall in the Chicago South Side Irish St. Patricks Day Parade (Sun Mar 15) |
For those of you that are interested, the MDA has been chosen as this year's Grand Marshall in the parade. The parade will be on Sunday, March 15, 2009. It will start at noon at the corner of 103rd ...
Posted by on Sun, 08 Mar 2009 15:58:00 GMT |
This Is My Idea of a Superman!!! |
This was one of the most inspirational storties I have ever read. It is a good example of how you can control your fate. I feel that I have tried very hard in life and I have failed many times. But...
Posted by on Sat, 24 Jan 2009 20:17:00 GMT |
PTC-124 may be FDA approved this year, without Phase 3 because of its remarkable effectiveness |
Well, Brandon finally started phase 2B of the clincal trial for PTC-124. He started on Dec 2, 2008. One of the tests they use to determine the effectiveness of the medication is to do a 6-minute wal...
Posted by on Sun, 18 Jan 2009 15:41:00 GMT |
Genzyme believes PTC-124 will cure DMD & 1000s of other genetic diseases with nonsense mutation |
Genzyme Corporation ..:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />and PTC Therapeutics Announce Collaboration on Small Molecule for Genetic Diseases..:namespace prefix ...
Posted by on Sun, 20 Jul 2008 18:49:00 GMT |
Disappointing News About Brandon and the PTC-124 Trial |
As far as I am concerned, I think my son Brandon is one of the bravest people on this earth, despite his tiny 45lb. body. I have never heard him once complain about his illness. He asked me, "Mommy, w...
Posted by on Wed, 02 Apr 2008 19:36:00 GMT |
WHAT IS DMD AND HOW YOU CAN HELP. |
Duchenne Muscular DystrophyResearch Fund (DMDfund)About Duchenne Muscular Dystrophy (DMD)
Duchenne Muscular Dystrophy (DMD) is the most common lethal genetic disease of children worldwide.
It i...
Posted by on Mon, 24 Mar 2008 19:23:00 GMT |
My Superhero Ego is Killing Me. |
I just read the most inspirational book ever. It is called: A New Earth Awakening to Your Life's Purpose by Eckhart Tolle. I decided to read it because Oprah talked about it and late...
Posted by on Wed, 05 Mar 2008 18:21:00 GMT |
Brandon makes it in the clinical trial for PTC-124 / DMD makes front page of New York Times. |
This was originally supposed to be Phase 3 which is the last phase before it is approved by the FDA. However, there was a minor set back for some reason and it will be called phase 2B.
On March 3, my ...
Posted by on Wed, 20 Feb 2008 03:47:00 GMT |
2007 Christmas letter |
Christmas 2007
This past year has been very interesting with a lot of positive outcomes. For the new people on my Christmas list this year, Brandon has Duchenne Muscular Dystrophy (DMD). T...
Posted by on Fri, 14 Dec 2007 07:56:00 GMT |
