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Donna
  • Female
  • East Dubuque, IL
  • United States
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Donna's Page

Latest Activity

Donna replied to Eddy Rivera's discussion Support with advice to help my son with deletion of exon 58?
"Hello Eddy, my son Kyle also has deletion of exon 58. You are the first one I have found with the same deletion!!! We are from Ilinois in the United States and doctor with Dr. Katherine Matthews at the University of Iowa Children's Hospital in…"
Sep 1, 2015
Donna replied to Shawn's discussion Deflazacort no longer available in the US?
"Have not had any issues and we just received a shipment in April. I thought I also read in the recent edition of Quest Magazine (MDA) that they are trying to fast track deflazacort for approval in the US.  (I don't think I read that…"
Apr 21, 2015
Donna favorited Mario Damiani's blog post What PPMD Means to Me (The Only DMD/BMD Blog You’ll Read Today with a "Sex and the City" Reference)
Mar 10, 2015
Donna replied to jiasusa5's discussion Our Deflazacort shipment is being hold by FDA in the post office,anyone experienced the same situation?
"Did you go through Masters Marketing? Here is their contact information: Julie Emms Online Customer Service T: 0208 327 0900 F: 0208 327 0901 For US customers: Toll free Tel: 1-800-969-1152 Toll free fax: 1-888-887-9872 E:…"
Dec 22, 2014
Donna replied to Angela Bourgeois's discussion Ataluren
"What kind of growth did he experience? Did he lose mobility or when you put him back on daily was he fine? These decisions are the hardest...."
Nov 26, 2014
Donna replied to Angela Bourgeois's discussion Ataluren
"I would be inclined to say yes it does - in our case - we think. However, having said that, you should also know that our son was diagnosed a couple weeks after his 5th birthday. Ataluren was getting towards the end of recruitment so we had to…"
Nov 13, 2014
Donna replied to Dawn Steele's discussion Results in & deflazacort
"Be careful on the shipping charges on the deflazacort.  The first vendor we went through charged us almost 50% of the cost of the deflazacort (might have been more) - it was insane.  Masters Marketing (& Julie Emms) has a pretty darn…"
Jul 24, 2014
Donna is attending PPMD's event
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ACT DMD Update with PTC (Webinar) at Online Webinar - Eastern Time Zone

February 5, 2014 from 1pm to 2pm
On February 5, 2014, Dr. Robert Spiegel, Chief Medical Officer at PTC Therapeutics, presented an update about PTC’s Phase 3 study of ataluren, now known as the Ataluren Confirmatory Trial in DMD (ACT DMD).See More
Jan 29, 2014

Profile Information

About me:
Mom to Erin, Joey, and Kyle and wife to my wonderful husband, Sean. We were high school sweethearts and our dreams all came true when we had our children. They are truly a blessing, even during these troubling times.
Name(s) of child(ren)/individual(s) with Duchenne:
Kyle
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
East Dubuque, IL

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Donna's Blog

We're new....Does it ever get easier???

Posted on August 27, 2008 at 9:02pm 8 Comments

I copied this in from the other Parent Project message board and it was suggested I post here as well. So here it goes:



Hi,

Well, we're new to this game here. My son was diagnosed with DMD initially on April 21st (one week to the day of his 5th birthday). Official diagnosis confirmed based on genetic testing on June 10th - point mutation. We SIMPLY went to the doctor's for his kindergarten physical and through very casual conversation his nurse practicioner decided to run a… Continue

Comment Wall (14 comments)

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At 11:55pm on September 23, 2012, Trinh Nguyen said…

Dear Donna,

Our boy got stop codon in exon 16. Ataluren is the research for this case, isn't it ? Can you tell me more about the trial your son is on.

Very much thanks.

Trinh

At 4:54am on September 2, 2011, Clare Harper said…
Donna gald to hear that,hopefully this is a drug if administered in time will maintain the boys ,and really slow the wasting down,thanks for getting back ,take care clare
At 10:03am on September 1, 2011, Clare Harper said…
Hi Donna,how do you think your son is doing since going back on the trial?thanks Clare
At 5:24pm on April 23, 2010, Fran Clavey said…
Hi Donna,
Thanks for reaching out and connecting with me. I'm terribly sorry about your son's diagnosis. I know how you feel. James was diagnosed a week after his 6th birthday...my world came crashing down....he just turned 9. He is doing well and is still walking. Loves to ride his bike and play with his 5 year old sister but tires easily because he does tooo much. Everyday is quite challenging both physically and mentally on all of us. Once a week he does water therapy and hippotherapy and once a month we see the PT. Please reach out whenever you need anything or just to talk. Please keep in touch.
Fran
At 12:36pm on February 12, 2010, Donna Gluck said…
Donna,
Thank for the heads up about the 2ND grader in your area. I only use words that the mother tells me to use. Some say sick muscles, Duchenne, MD, etc. I do not share any thing with the boys that their parent hasn't already told them. If you might pass my information along; I would welcome a call if they are intrested.I am very careful not to share any info with the boys. I need only one more participant to complete the data collecting! Thanks for your intrest Donna.
Donnag
At 6:07pm on February 9, 2010, Donna Gluck said…
Donna, The age group is 8-12. Darn it. What I ask the boys is to tell a story about what it is like to be them. And to name any emotions they have in the picture. im careful to ask before hand so I use the same language as the parent. If you know of any other moms of boys 8 to 12. Mind passing along my info?
At 5:49pm on February 9, 2010, Donna Gluck said…
Donna,
Thank you so much for your intrest. When can I come up? If you want I can email you information for participation. I can come to your home or meet in a local place. Such as a library.I have done both.Whatever the child and mom feel most comfortable with. I ask your sone to draw a picture and tellme a story about it. Average time is 1 hour. When would it be a good time for you? If on the weekend my husband and I can make an overnight of it. Thanks so much Donna!
At 2:32pm on December 5, 2009, baljit kaur said…
Hi Donna
We've just recieved the deflazacort in the mail today. Thanks for all your help on where to get it and who to contact.And yes the price is reasonable.I just hope he swallows the pills without complaining now!
Baljit
At 12:34pm on November 17, 2009, baljit kaur said…
Hi Donna
I'm just wondering where you get the deflazacort from.
Thanks for any info.
Baljit
At 9:19pm on September 14, 2009, Tracey Hartz said…
Hi Donna! Thanks for your comment on my page. We, like you, like so many people here, were totally floored by Seth's diagnosis, too. But we're getting through it. Seth has a point mutation, too-I know the 2b trial is closed, which is a little frustrating, but I was reading that they may be able to forego a third phase and submit 2b to the FDA? Fingers crossed! I hope your son (he is so cute!) is doing well on the PTC. Take care!
 
 
 

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