Jenn M
Mother to Austin(20), Max(17), James(11) and Norah(8). Austin & Max have Duchenne Muscular Dystrophy & James has Primary Immune Deficiency
![Clinical Trials: A mom: Sometimes if feels like there are “Haves” and “Have Nots”](https://i.ytimg.com/vi/ibUSd8Yni-Q/maxresdefault.jpg)
Clinical Trials: A mom: Sometimes if feels like there are “Haves” and “Have Nots”
In this video, a mother of two sons with Duchenne Muscular Dystrophy talks honestly about how often in rare disease it feels like there are “haves” and “have-nots” in the community. She talks about both the division trials can create in a community but also the support you can gain.
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Clinical Trials: A mom: Sometimes if feels like there are “Haves” and “Have Nots”
![](https://i.ytimg.com/vi/pj042H9NuH8/hqdefault.jpg)
Clinical Trials: A mom: I didn’t worry about disease progression then and I don’t post trial.
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Clinical Trials: A mom on assessing risk when her child has a treatable disease
![](https://i.ytimg.com/vi/oLb3vIDG1Oc/hqdefault.jpg)
Two Sons, A Spontaneous Mutation and Two Diagnoses of Duchenne Muscular Dystrophy
![](https://i.ytimg.com/vi/x77yb_ItIeM/hqdefault.jpg)
Two sons with Duchenne Muscular Dystrophy and No Preconceived Notions About the Diagnosis
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Clinical Trials: A mom: Don’t feel rushed, don’t feel desperate – read the Informed Consent
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Clinical Trials: Deciding if this is the right trial – Are you looking for curative or something that mitigates? What if there is a placebo?
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We are a Medically Complex Family. It is the Fabric of Who We Are.
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Clinical Trials: A mom on weighing risk, understanding endpoints and managing expectations
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Clinical Trials: My son participated in double-blind placebo study…I did not anticipate the extended trial timeline
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Clinical Trials: A mom: “Eventually we are going to be looking at combination therapies
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Clinical Trials: Excitement to participate can blind you to the details
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Clinical Trials: Mom finds out about a trial on Facebook, learns about the trial design & the screening process
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Clinical Trials: Child Life can help make the trial experience better for your child.
![](https://i.ytimg.com/vi/xJm1qa3Fwa0/hqdefault.jpg)
Clinical Trials: A mom: We can’t ignore the economics.
![](https://i.ytimg.com/vi/XNPJwX5XBK8/hqdefault.jpg)
Clinical Trials: A mom on dose escalation studies and gene therapy
![](https://i.ytimg.com/vi/4oLQg56DNbQ/hqdefault.jpg)
Clinical Trials: Assent to Participate: My son is old enough to decide for himself.
Made possible by a grant from:![Sponsor Logo](https://api.courageousparentsnetwork.org/app/uploads/2020/02/SANOFI_Genzyme_RVB.jpg)
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