Vt. Mom Begs FDA: Save My Other Son
Rare Diseases Take Spotlight in Annual Event by The U.S. Food and Drug Administration
License (according to Flickr): United States Government Work
License (according to Flickr): United States Government Work
Both her boys have Duchenne muscular dystrophy, but only her 10-year-old Max has access to a wonder drug that appears to be reversing the symptoms of this deadly disease. His 13-year-old brother Austin is languishing in a wheelchair while Max has been able to take the drug eteplirsen through a highly successful clinical trial. After 60 weeks on an IV infusion, Max was able to participate in a three-mile Halloween walk. "It's the first time ever -- he's never been able to walk that far. He's always gone with a wheelchair, even as a toddler," said McNary, 32. "He actually doesn't look like a Duchenne kid at all. And his balance is great." "People all over the world are calling it a miracle," she said of the drug.
Keywords:
Duchenne muscular dystrophy clinical trial Austin drug wheelchair disease IV infusion muscle strength inclusion criteria gene mutation double-blind study United States breathing ABCNews.com no cure toddler steroids the disease a miracle Halloween stable healthy second marriage a letter symptoms Columbus side effects Hospital organizations first timePeople:
Austin
Overall Sentiment: -0.122599
Relevance: 0.843169
| Sentiment | Quote |
|---|---|
| 0 | "My brother says he's doing it for me, that he's trying really hard," Austin told ... |
| -0.028516 | "My brother says he's doing it for me, that he's trying really hard," Austin told ABCNews.com in August. "That's why he wanted to do it." |
| Sentiment Stats: |
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Disambiguation: PoliticianReferences:
Max
Overall Sentiment: 0.146993
Relevance: 0.60938
McNary
Overall Sentiment: 0.114472
Relevance: 0.567088
| Sentiment | Quote |
|---|---|
| 0 | "It's the first time ever -- he's never been able to walk that far. He's always gone with a wheelchair, even as a toddler," said McNary, ... |
| 0.120372 | "It's the first time ever -- he's never been able to walk that far. He's always gone with a wheelchair, even as a toddler," said McNary, 32. "He actually doesn't look like a Duchenne kid at all. And his balance is great." |
| 0 | "This has been a bitter-sweet journey for us," McNary wrote ... |
| 0.0488875 | "This has been a bitter-sweet journey for us," McNary wrote in a letter to the FDA this week. "As we watch Max get better, we also watch his older brother, Austin, 13, get worse. He suffers, silently, as his disease progresses." |
| Sentiment Stats: |
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Cure Duchenne
Overall Sentiment: 0.0964591
Relevance: 0.350396
Craig
Overall Sentiment: 0.271376
Relevance: 0.277758
Leclair
Overall Sentiment: 0
Relevance: 0.245133
Key:
- Aggregate Sentiment is meant to be an indicator of an individual's overall sentiment.
- The Mean is meant to be an indicator of an individual's average comment sentiment.
- The Standard Deviation, when there are enough quotes, will indicate an individual's consistency of sentiment (i.e. a Standard Deviation of 0 would mean they were very consistent in their sentiment and 1 would mean they were very inconsistent).
Note that quote stats are likely to be meaningless beyond the aggregate score due to the tiny sample size. However, they are always provided just in case you find something useful there.
Additional Info:
HealthCondition: muscular dystrophy
Overall Sentiment: 0.0300408
Relevance: 0.593536
Organization: Food and Drug Administration
Overall Sentiment: 0.391463
Relevance: 0.487323
Disambiguation: References:
Webpage Header Details
Source Webpage: Source
Webpage Provided Keywords:
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Webpage Provided Keywords:
- abc news online
- abcnews.com
- austin leclaire
- brothers
- clinical trial
- disease
- Dr. Tim
- Dr. Tim Johnson
- Dr. Timothy Johnson
- drug trial
- duchenne muscular dystrophy
- eteplirsen
- health
- health information
- health news
- John McKenzie
- max leclaire
- mcnary
- medical news
- muscular dystrophy
- online news
- sarepta therapeutics
- Vermont
Site Provided Desc:
Vermont brothers Max and Austin Leclair have Duchenne muscular dystrophy, but one is improving in a clinical trial and the other is wasting away in a wheelchair.
Provided Title:
Vt. Mom Begs FDA: Save My Other Son
