Amanda
Forum Replies Created
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@Phillipjax, thank you for linking the websites. I have not had the opportunity to review them, but will ASAP. It is very important that pALS stay informed with data. Providing the links will help our members research!
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I’m glad you decided to post on the forum. As you can see, each member has had a different experience. Hopefully some will be able to share some helpful information or referrals.
Amanda
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I learned a lot from this article!
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I learned a lot from this article!
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Diana,
Once again you have inspired me! Thank you for seeking out opportunities to help understand and find a cure for ALS. I know you have a lot on your shoulders and your participation is so valuable. Please keep us posted as you learn more about these two studies. Thank you for everything you do!
Amanda
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Diana, have you read the article about this in ALS News Today yet? https://alsnewstoday.com/2019/09/23/healey-amg-center-mass-general-launches-first-als-platform-trial-five-candidate-treatments/
This is the third time today I heard this news! How exciting!!
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That’s wonderful news. Earlier today someone mentioned this hospital to me. I wonder if they were referring to the same thing?
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I do think you are right, and Riluzole isn’t beneficial for ALS caused by the SOD1 mutation.
My family has the SOD1 mutation as I’ve mentioned before. In the past, family members with ALS were prescribed Riluzole; however, my cousin who was more recently diagnosed, is being treated with infusions which I believe is Radicava.Â
I was reading over different websites and articles related to ALS treatments. I was looking specifically for information regarding treating inherited ALS by specific genetic mutations. I know there are some studies in progress that are in clinical trials specifically targeting/treating ALS caused by the SOD1 and C9 mutations.
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Dagmar, I think you nailed it! Medical treatment needs to be tailored to each pALS and their specific situation. I hope that the different organizations and agencies rally around this kind of research to help move it forward.
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Dagmar, I think you nailed it! Medical treatment needs to be tailored to each pALS and their specific situation. I hope that the different organizations and agencies rally around this kind of research to help move it forward.
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Thank you @Dagmar!
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I think I’ll be seeing Dr. Benatar soon and I’ll ask him. I know he’s on the front line of ALS research and treatment. I’ll share when I learn a little more
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I have to say that any attention brought to the cause, especially at that time was a good thing.
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Thank you Diana! I truly believe that the ALS Registry will be beneficial for researchers. Dagmar’s article was wonderful and I hope she inspires other members to register too.
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@Owen. I looked at the various websites mentioned in some of the posts, and I agree with your comments. I believe that if there was any real scientific evidence that one of the research companies would be willing to make financial and time investments to further research and trials. I think that the professionals in the medical field, specifically ones focusing on ALS, will continue to seek out effective treatments and help pALS and others steer clear protocols that are not supported by data and research.
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Hello Nancy, and thank you so much for sharing your information. I do believe that is the same study that the team in Miami is participating in. I know there are numerous sites participating and what you described sounds just like what my case manager was telling me.
I would also like to thank you for participating. Without people like you willing to volunteer and endure all the unpleasantness, they would not be making advances! I admire you for undertaking such a challenge with little family help.
I think it is so beneficial that so many doctors and research teams are working together!
Please keep us posted as the research progresses. As I learn more about what they are doing in Miami, I will also share.
Amanda
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@ Rudy, that is great news that your children will not inherit the mutation! That must be of some comfort to you.
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@Glenn, did your doctor conduct genetic testing? Do you know if you have any of the mutations associated with ALS?
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That sounds positive! Please continue to keep us posted.
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@Lisa, where is your trial being conducted out of? The study I volunteer for is doing trials on the SOD1 and C9 with gene therapy through lumbar puncture too. I wonder if it is the same study or of the two are working together. I know Dr. Benatar is working other researchers and sharing information.
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@Mary, Hello. I was just wondering how your second appointment went. How are you feeling? Was the doctor able to provide you with any definitive information?
Amanda
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When was this article published?
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Diana,
Thank you for sharing such personal information. I cannot even imagine how you felt/feel facing both the loss of your daughter and diagnoses. I think the forum is very lucky to have you as a member, and I’m sure that you are helping others without even knowing it
In my other life (outside of this forum) I’m a school psychologist. I’ve worked and for years on the crisis side of things such as post-ventions, suicide and crisis response. In Florida, after the Parkland school shootings, the state has passed legislation requiring ALL school employees to be trained in Youth Mental Health First Aid, which is primarily a suicide prevention program. I’m lucky enough to have become one of the trainers. Although we focus on Youth, the principals and actions apply to anyone. Hearing your experience just drives the fact home that we need more mental health services and awareness. Depression is a dreadful illness, and I am so sorry for your loss. Thank you again for sharing and being willing to put yourself out there to help others.
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Debbie, how are things going? Did you decide to take a break and if so, were you able to get some respite care services. I’m sure that has been a difficult decision.