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lisa burke
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  • cardiff
  • United Kingdom
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About me:
My 4 year old son has DMD. Deletion of exons 45-50. He was diagnosed just after birth through newborn screening. I have another son aged 2 through pgd and he is healthy.
About my family:
We have no family history of DMD. I'm not a carrier.
Name(s) of child(ren)/individual(s) with Duchenne:
Seth
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Cardiff

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Lisa burke's Blog

Not sure if this has been posted before. AVI at TIDES Conference.

Posted on May 21, 2009 at 4:52pm 0 Comments

May 19, 2009 08:00 ETAVI BioPharma, Inc. to Present at TIDES 2009 Conference

AVI-4658 Therapeutic for Duchenne Muscular Dystrophy Featured in 'Innovation Showcase'



PORTLAND, OR--(Marketwire - May 19, 2009) - AVI BioPharma, Inc. (NASDAQ: AVII), a developer of RNA-based drugs, today announced that Peter Sazani, Ph.D., Executive Director of Preclinical Development, is presenting an overview of AVI-4658 today at the at the TIDES Oligonucleotide and Peptide Technology and Product… Continue

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At 4:36pm on February 21, 2013, Brenna said…

Hi Lisa- Is there anywhere we can private mess. regarding our involvement in a clinical trial? Not sure the whole world wants to hear the "good, bad and the ugly".

-Brenna

At 11:39pm on December 31, 2012, Tonya Carlone said…

Hi Lisa!  I saw your post about starting your now 4 year old on steroids and that he qualifies for exon skipping 51.  My son is 6, but will be 7 in March.  I ended up starting Gavin at 3.5, with Dr. Wong.  She was going to wait, however we, my family and I decided to start then at a low dose of a 6mg tab of Defalzacort daily.  We are very glad we did that and that although he is small, he still grows.  He has grown 2 inches this year.  He has not lost strength, they have not raised his dose.  We are however in the exon skipping trial and have been for a year and now  and starting open label in 2 weeks.  We are in the international trial in Canada.   Gavin's deletion is 48-50.

At 9:14am on November 1, 2012, Dilfuza Mendibaeva said…

Hi Lisa.I hope you and your family are doing good. I need your advise. I have 3 years old son with DMD. Here we could not find right specialist but visited paediatrician dr who never deal with this kind of patient. So we are the first patient for her. My son was taking Calcium with Vit D3,CoQ 50mg,Unjury protein mix powder,Omega3 with Vit D and multivit as a child dose. After visit our paediatrician ,she told as to give him an adult dose. I did some research in net. But still i would like to get some advise who is already with experience. Could you tell me please, what kind of supplements are you giving for your son and how much the dose? I know your son also 3 years old. I hope i can manage some how till we find right specialist for my son. I really appreciate your advise

At 2:33am on October 7, 2012, Gonzalo Monteverde said…

Hi Lisa

Thanks for the information, Joaquin just started also Protandim and Idebenone. What we don't know is to start the deflazacort . local dr. recommended us 30mg each 48hrs

Nice to know that Seth and Joaquin are same age. Lets keep in touch.

Kind regards

Gonzalo

At 4:19am on August 27, 2012, Sif Hauksdóttir said…
No we dont know any mutation yet, are waiting for it will probably know in about 4 weeks.

Is newborn screening for this a standard in the uk?

Good luck with starting steroids, what steroids wikk you use?
At 5:31pm on July 23, 2012, Michelle Gonzales said…

Lisa - glad to have you as a friend on this community.  How old is Seth?  What a cutie pie!!!!

Michelle

At 5:45pm on June 9, 2012, Peter said…

Thank you, I have just noticed the comments, we both have children moreover the same age, praying the rescue for them will come on time. And we both live in Europe. Wish you and your family all the best.

At 1:10pm on February 28, 2012, Maria Pezzuolo said…

Thank you for your comment really means alot :)

At 9:26am on September 12, 2011, Kristina Caldwell said…

Thank you. Your little one is a cutie!

 

At 6:57pm on May 21, 2011, victoria louise june elkington said…
Hi thanks for friend request,I dont come on very often don't get much time either its good to here from u its so hard when there so young everything is so uncertain my son is quite behind his milestones bless him he doesant walk yet I don't no wot the future holds im so sad at the moment I just worry so much its hard to be positive but I have to try not to cry all the time and move forwards and be strong .....so hard be good to message each other as the closeness in age of our some. Xthanks
 
 
 

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