My mom and I took a trip up north to Perrysburg, Ohio for a parent outreach session with CureDuchenne on April 26th. This is were I get my strength. Its companies like Cure Duchenne and Parent Project Muscular Dystrophy (PPMD) who have dedicated their life to finding a treatment that will better the quality of life for our boys. Both CureDuchenne and PPMD were started by mothers who's son or son's were effected by Duchenne MD.
The meeting was very informative on the research that is certainly taking place. I was happy that I was able to make it to the event. It gave me hope, I was able to meet parents that are going through the same journey, and to meet a 40 year old Duchenne man. His name was Tom and he is a very inspiring man. He gave us two words of advice, "Have god in your life and to eat your vegetables."
The information I received that is near to my heart and gives me hope for Logan is in the exon skipping. I have attached a link if your interested in reading:
http://www.muscular-dystrophy.org/about_muscular_dystrophy/research_faqs/612_what_is_exon_skipping_and_how_does_it_work
They are currently working on skipping exon 51. Logan is missing exon 46 which would mean that they would need to skip exon 45. Exon 45 is in line for clinical trial once the drug has been approved for exon 51. This woud be a treatment and not a cure. It would turn his Duchenne MD into a Beckers MD. Beckers MD produces some level of dystrophin as where Duchenne produces none. So turning Logan's condition into a Beckers would give his body the ability to produce some dystrophin and give him a better quality of life.
All we have is hope, These clinical trials give me hope that Logan will be have a good quality of life.
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So glad you were able to go and even happier about the good news!
ReplyDeleteI don't see any entry after June 2012. I hope that everybody is doing fine. I would love to get in touch with you as a fellow DMD mom from Cincinnati.
ReplyDeleteHi, I have actually stopped posting to this page and started a FB page also called Logan's Hope - Living with Duchenne Muscular Dystrophy. I haven't really been doing much posting. It all gets to be a little overwhelming sometimes. Things with Logan are going well. I actually live on the Eastside of Cincinnati. I would love to talk to you. You can email me at billbehrend@zoomtown.com. I hope all is well with you. Thank you for contacting me.
ReplyDeleteHi Angela,
ReplyDeleteI emailed you with my information last week. I didn't hear from you so thought of touching base. Maybe my email went to your spam.