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Geraldine Coolidge
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Need photos

Started Jul 21, 2013 0 Replies

Hi everyone,I am in need of photographs of your children, if you are willing for a fundraiser we are having to End Duchenne. I am looking at putting together a slide show with a couple pictures of…Continue

Exon 44 Deletion

Started this discussion. Last reply by Sai Chand. Gurujala Feb 13. 23 Replies

I have just received the genetic results for Preston. They have found that he is missing Exon 44. I have been doing some research regarding clinical trials being done, but everything I am finding is…Continue

 

Geraldine Coolidge's Page

Latest Activity

Sanja Kogelnik replied to Geraldine Coolidge's discussion Exon 44 Deletion
"This looks promissing,  I think year 2020 Will be big !!! We can have two therapy  for deletion of exon 44 on the market. Finger…"
Nov 30, 2016
Antonio Castro replied to Geraldine Coolidge's discussion Exon 44 Deletion
"Hello, My son is 5 and has 45 to 52 exons deletion, I'm currently trying to get him enrolled on clinical trials at Children's Hospital in Dallas, TX. Even though I've not received a formal confirmation, I'm in touch with…"
Oct 28, 2016
Sanja Kogelnik replied to Geraldine Coolidge's discussion Exon 44 Deletion
"Hey, thanks for reply Rahul. Yes i understand about placebo phase, but this need to be done because they can compare effect in the drug. it is truth that last for too long, but maybe FDA Will approve drug sooner because 96 week long placebo trial. I…"
Oct 18, 2016
Rahul Deshpande replied to Geraldine Coolidge's discussion Exon 44 Deletion
"That's correct this is a 96 week placebo trial. So for almost 2 years you give IV to your child not knowing if they are getting medicine or not. Bad on our children. After 96 weeks the open label will start and will be completed in 2019.…"
Oct 14, 2016
Sanja Kogelnik replied to Geraldine Coolidge's discussion Exon 44 Deletion
"Hey, So i have question about clinical trial of exon skipping 45. If Placebo-Controlled trial will last for 96 weeks, but when i went to clinical trials.gov it is writen A Double-Blind, Placebo-Controlled, Multi-Center Study With an Open-Label…"
Oct 13, 2016
Marisa Carvalho Reis replied to Geraldine Coolidge's discussion Exon 44 Deletion
"Olá, meu filho está com 9 anos e tem deleção no 45, estão a recrutar nos EU, alguem me sabe dizer se esta para breve em outros países?! Vivo em profunda anciedade, pois por enquanto ele ainda anda e tem os…"
Sep 23, 2016
Sanja Kogelnik replied to Geraldine Coolidge's discussion Exon 44 Deletion
"Hey, my son also have exon 44 deletion. My doctor say that this mutation is mild type of DMD. I hope its true. My son was 2 in september. He is doing ok, he have a lot of anergy. I think this is a good sign :) I have writen to Sarepta too and i didn…"
Sep 22, 2016
Rahul Deshpande replied to Geraldine Coolidge's discussion Exon 44 Deletion
"My son has also exon 44 deletion. The study of Sarepta has still not started recruiting. See the link https://www.clinicaltrials.gov/ct2/show/NCT02500381?term=NCT02500381&rank=1 Bad news is that this study is going to have a 96 weeks placebo."
Jul 27, 2016
Sam replied to Geraldine Coolidge's discussion Exon 44 Deletion
"Dears i read this post and i have same case as you, my son has exon 44 deleted:(  although the post is old but i wanted to share with you that i found premuch same info that there is trials on deleting skipping exon 45 in order to stop the…"
Jul 27, 2016
Geraldine Coolidge replied to Nadine Foley's discussion CK Levels
"I agree. cK levels can vary and hard to understand why they seem to be all over the place. When Preston was diagnosed 3 years ago he was found to have levels over 61,000. Now he's downtown the 19,000's. His doctors check it every once in…"
Mar 23, 2015
Geraldine Coolidge posted a discussion

Need photos

Hi everyone,I am in need of photographs of your children, if you are willing for a fundraiser we are having to End Duchenne. I am looking at putting together a slide show with a couple pictures of some of our brave young men. I will need 2 or 3 different photos of each child with their name where you live and there date of birth. I would like this slide show to be in the memory of those who have lost the fight and in honor of those still fighting the battle. If you are willing please send your…See More
Jul 21, 2013
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JAYANTO KUNDU replied to Geraldine Coolidge's discussion Exon 44 Deletion
"Hi  Bretsik, can  you  please  send me  the  friend  request  in  the  following  email  Id jayantokundu@gmail.com."
Jul 21, 2013
JAYANTO KUNDU replied to Geraldine Coolidge's discussion Exon 44 Deletion
"Surely  I  am   adding  you  as   friend  in   FACEBOOK"
Jul 20, 2013
Denise Bretsik replied to Geraldine Coolidge's discussion Exon 44 Deletion
"Right now there is no treatment but there is a lot of hope in research. Many trials going on...I hope to get my son in one...just watching for the right one for us. Is your son on steroids? Also Facebook is a great resource. It…"
Jul 20, 2013
JAYANTO KUNDU replied to Geraldine Coolidge's discussion Exon 44 Deletion
"Hi  Bretsik, What  are  the  other  treatments   your  son  is  availing  in  your  country.  can  you  please  update."
Jul 18, 2013
Denise Bretsik replied to Geraldine Coolidge's discussion Exon 44 Deletion
"My son is doing ok. In the past year he has been having more problems with stairs and seems to not be able to walk as far but still doing really well considering. I really wish I had the answer. Seems from what I am reading Exon 51 skipping is…"
Jul 9, 2013

Profile Information

About me:
I am a 37 year old single mother of two beautiful boys. I have worked in the hearing health care industry for the last 15yrs. In 2007 I opened my own practice here in Canada. I enjoy meeting people and getting involved with community projects.
About my family:
My oldest son Brayden is 14 yrs old(Aug. 12, 1997) and in grade 8. He is your typical young man either out with friends or on the xbox. I am happy to say he is a very polite caring young man.
My youngest son Preston, was my birthday gift (Jan. 3, 2006). Preston like his big brother enjoys video games. He also enjoys to read, draw, watch movies and play with his toys.
Unable to find a babysitter for my children,I was fortunate to find an Angel to help. For the last 5 years, Juvy has joined our family from the Philipiens and will be staying on to help with Prestons ongoing care. She enjoys watching movies, hanging with her family and time on the computer.
Name(s) of child(ren)/individual(s) with Duchenne:
Preston Coolidge
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Lashburn Saskatchewan

Geraldine Coolidge's Blog

Just Diagnosed

Posted on January 23, 2012 at 1:41pm 9 Comments

On Jan. 9, 2012, I recieved confirmation that my son Preston has Duchenne's. It will not be untill May that he is seen in the muscle clinic. I am wondering if there are any families that can help me fill in the blanks as to what to expect. I would also like to speak to families from Saskatchewan or Alberta Canada, regarding the services I can access for my son. Thank you.

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At 9:54pm on January 26, 2012, Leeandra Arhdeacon said…

Geraldine, My son just turned 5 and is doing well. Please know that we are all here for you and can be found on facebook too. Hugs from California. :)

 
 
 

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