Deletion of exon 51

For the parents of boys with a deletion of exon 51.

Members: 19
Latest Activity: Jan 24, 2016


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Comment by Amanda on April 17, 2012 at 12:43pm


Comment by farhad on January 11, 2011 at 9:32am

 Hi Tracy, here is the link:

pls, let me to know what do you think?

bests, Farhad

Comment by Tracy Seckler on January 11, 2011 at 7:31am
Hi Farhad, Can you please send me a link to that letter?  Thanks, Tracy
Comment by farhad on January 11, 2011 at 12:11am
Back to Tracy's comment, is there any advance for treat a 51 deletion? I saw a letter from AVI board that their drug for 51 deletion, is not going well for money and investor problems!
Thanx, Farhad
Comment by Brenna on January 10, 2011 at 9:44pm



Comment by Tracy Seckler on January 10, 2011 at 8:49pm

Hi Brenna,


My name is Tracy and my son Charley has deletion of exon 51.  Does your son have deletion of 51?  Or does he need to skip exon 51 to restore his reading frame?  GSK2402968 skips exon 51 so if your son is already missing 51 that particular compound won't be helpful.  Check that can be pretty confusing. 

Comment by Brenna on January 10, 2011 at 8:27pm
Yippie there is a group with deletion 51!  I'm Brenna we are from Wisconsin.  Our son just turned seven (sorta hate milestones).  We see Dr. Day at Gillettes in MN.  Went to our first support group on sat. Dr Day says researcher and the FDA are meeting on the 20th of Jan and again Feb 2 to "get the ball rolling" with GSK2406928.  Does anyone know anything.  Being a little new to this, how long have been waiting for the ball to roll?  Should we be doing anything while we are waiting?
Comment by Michelle Gonzales on August 13, 2009 at 10:50am
There was a post on here under Research from Mindy called AVI - skipping 51. She spoke with the doctor's office and she gave out the email address for Dr. Mendel's assistant. I emailed her and she confirmed with me and put us on "the list". I haven't heard anything since, but I've been signing up for every list available. Believe it or not, I signed Nicolas up for the trials in England!! ha ha - They also responded that they are just using localized boys, but will put us on list in case they expand their study. I guess we just do whatever we can and see what comes first!
Comment by christine good on August 12, 2009 at 9:37pm
No, I wish.
Comment by Julie Hathaway on August 12, 2009 at 9:35pm
You are so right. I knew that. I just get so excited and overwhelmed by everything. I need to relax, take a deep breath and count to 10 before I respond. LOL! Thanks for keeping me grounded. Are you doing work for Charley's fund?

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