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Epilepsy
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When I was a caregiver I worked with someone who suffered from frequent seizures. It took an emotional toll every time it happened. I cannot imagine the added pain of watching it happen to your child. Finding hope is amazing, and every life they can help is a win for them and the community as a whole. I sincerely hope they see that and choose to build upon their success rather than breaking trust with this group and affecting their credibility for other trials they want to run in the future. Every life matters.
Kathryn supported: Urge Marinus Pharmaceuticals to Continue Ganaxalone Production for TSC PatientsWe sacrifice everything to save our children suffering. Please help these children from suffering more and improve their trajectories by giving them access to medication that has completely changed their quality of life for the better!
MaryAnn supported: Urge Marinus Pharmaceuticals to Continue Ganaxalone Production for TSC PatientsThis child needs help. The person in charge of the trial must be held accountable for going against their word. The promise was, if the trial drug helped, they would continue giving it to him 2 years after the study. Well the meds helped him a lot. Now they are back to their child having very aggressive seizures. AGAIN! This family just wants their child back. Tuberous sclerosis is not a joke. We need more help and recognition. Lets hold the head honchos accountable. Just sharing will bring enough attention to where it hits the news.
Kelly supported: Urge Marinus Pharmaceuticals to Continue Ganaxalone Production for TSC PatientsI work as a nurse practitioner and have seen firsthand the impact that a seizure disorder can have on a patient and their family. It is vitally important for patients to be able to access life changing medications.
Rachel supported: Urge Marinus Pharmaceuticals to Continue Ganaxalone Production for TSC PatientsMy daughter passed away during a severe seizure in March of 2018 so i understand the need of when a drug comes up that helps control seizures it should be conserved and distributed to the patients that need it. Please help those in need to help their children survive.
Ramona supported: Urge Marinus Pharmaceuticals to Continue Ganaxalone Production for TSC PatientsMy grandaughter and her family has been struggling with seizures since she was 1 year old, almost 18 years. After many years of treatments and surgeries, some of them radical, this drug is finally giving hope and relief. Please continue to make it available.
Nancy supported: Urge Marinus Pharmaceuticals to Continue Ganaxalone Production for TSC PatientsThat child needs that medication or his seizures will go in reverse once weaned off & the process will have to start all over again. Let this child have a somewhat normal childhood.
Paulette supported: Urge Marinus Pharmaceuticals to Continue Ganaxalone Production for TSC PatientsMy brother had epilepsy and passed during a seizure.
This medication may have helped save him.
Claire supported: Urge Marinus Pharmaceuticals to Continue Ganaxalone Production for TSC PatientsMy daughter suffers from seizures and I cannot imagine finally finding something that works to control them and it being under threat of being discontinued. Seizures are so debilitating and when not controlled severely limit the quality of life for the person and their family. I hope they make a way for this medication to continue!
Dana supported: Urge Marinus Pharmaceuticals to Continue Ganaxalone Production for TSC PatientsAs someone with TSC but also a long- time advocate this is an unethical breach to discontinue a trial this way and lock people out who depend on this drug. Marinus ought to be ashamed of their behavior and callousness for their trial recipients.
Nicole supported: Urge Marinus Pharmaceuticals to Continue Ganaxalone Production for TSC PatientsYou’re not alone — a community of supporters is ready to back you.
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