Recent content by rknt50a

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    ALS Signal Clinical Research Dashboard

    There is no reason that a clinical trial can 't get 5 stars on the PaCTD scale and still deliver excellent science. In fact, if more sponsors paid attention to some of the items in the PaCTD standards, they would actually do better when it comes to delivering the scientific truth quickly and...
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    ALS Signal Clinical Research Dashboard

    The PaCTD rating system explained -- https://iamals.org/wp-content/uploads/2020/07/PaCTD-Page-8.pdf
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    ALS Signal Clinical Research Dashboard

    This was executed as a completely volunteer effort by an ALS caregiver and people w ALS and other caregivers. They wanted to provide a dashboard with information on promising therapies that would save others, especially the newly diagnosed, hours of searching. There is also a PaCTD clinical...
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    New Legislation in US - Action Needed Now

    Two bills were introduced in US last week and need your help to move them ahead asap. Thanks if you can read and act and spread the word. They are bipartisan and are designed to help provide paths and resources that can move ALS therapy candidates forward more quickly. These came largely from...
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    #EveryCommunity map

    One of the purposes of this project is to let advocates show their legislators the impact of ALS in their districts. Unfortunately there are some zip codes that straddle two Congressional districts. That was the reason that the input had to drill down to an address; however, I AM ALS made sure...
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    #EveryCommunity map

    If you search for #EveryCommunity on social media, you'll see quite a few of them promoting the effort.
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    #EveryCommunity map

    This is an advocacy project in conjunction with other ALS organizations. Contact information will not be used for fundraising purposes. You can see the cooperating organizations here Every Community (scroll down).
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    #EveryCommunity map

    This is supported by multiple ALS organizations. https://iamals.org/everycommunity/ You may submit your name as someone with ALS, your name if you are a primary caregiver, or the name of a loved one lost to ALS. The idea is to provide a powerful visual that every community is affected...
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    Patient Fellowships - Intl Symposium - December - Perth

    August 19 deadline for applications. Please help spread the word to anyone with ALS MND who might be interested. Thanks. www.alssymp.org
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    Patient Fellowships - Intl Symposium - December - Perth

    Agenda has been posted -- Programme | International Symposium on MND/ALS
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    Patient Fellowships - Intl Symposium - December - Perth

    The Patient Fellows program continues for a third year to include people with ALS MND in the annual largest scientific Symposium on ALS MND. Deadline for applications is Aug. 19. Fellowships include registration at the Symposium for the person with ALS MND plus one caregiver, basic hotel for...
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    Brainstorm Nurown 'Right to Try' participant shares progress

    I too am interested in knowing who was at the FDA meeting, exactly what the protesters had to say to the FDA, and what the FDA had to say to them. The lack of a transcript or specific information about the meeting is odd imo, especially in light of the extensive social media blasts from the...
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    More Than Our Stories 2019 - A different kind of advocacy conference

    Please consider participating in the second annual www.MoreThanOurStories.org Feb 12-13 in Washington, DC. This is a different kind of advocacy conference. No Powerpoint. No formal presentations. Lots of healthy discussion about government policies that can be improved for people dealing...
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    ALS MND Symposium - Patient Fellows Program

    If you can get to Glasgow in December and have an interest in the science, this is a wonderful opportunity. Last year's participant thoughts/observations can be seen on the website. People who have the most expertise in ALS, those who actually have it, are an essential addition to these...
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    ALS MND Symposium - Patient Fellows Program

    NikkiJ, Thanks for the catch! Hope to see you in Glasgow.
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