Recent content by Par220

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    Healey Platform trial - faster enrollment = faster results

    It's critical that every ALS patient be made aware of the 50 sites nationwide that are enrolling for the Healey Platform trial. For those who don't know, this is a game changer trial design that accelerates the path to new ALS therapies by testing multiple treatments at once, reducing the cost...
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    Brainstorm Nurown 'Right to Try' participant shares progress

    I believe the FDA wants that for every drug for every condition. It's for advocates to put pressure and fight for access due to the urgency and lack of effective treatments for ALS. The FDA never voluntarily says we don't want you to complete the trial.
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    Another newly diagnosed

    I'm very sorry to hear. I quickly researched promising studies and enrolled in one very quickly. In addition to researching and considering options I think it's good to see what activism is being done and consider getting involved. I was diagnosed in 2011 and my biggest issue for those of us...
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    I ordered several times and it just showed up on my doorstep with no issue

    I ordered several times and it just showed up on my doorstep with no issue
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    Ibudilast

    I tried to send the link to you. Says moderator has to approve so I am not hopeful. I am in the US and got it easily and inexpensively in what appeared to be high quality packaging. Search online for mimaki family pharmacy.
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    https://www.mimaki-family-japan.com/item/detail?item_prefix=TF&item_code=003449&item_branch=001

    https://www.mimaki-family-japan.com/item/detail?item_prefix=TF&item_code=003449&item_branch=001
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    Ibudilast

    I'm a sporadic limb onset ALS. Easy to obtain ibudilast and inexpensive. For me I tried for 5 months with no change in progression.
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    Brainstorm Nurown 'Right to Try' participant shares progress

    Please search facebook for the ALS 'No More Excuses' FDA protest on June 12th and 13th in DC for access.
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    Brainstorm Nurown 'Right to Try' participant shares progress

    I'm just a messenger and I wanted to let you know Matt Bellina posted on his facebook account today: What is remarkable is that I was not able to get out of my chair on my own before Nurown. After my second treatment I was able to pull up to standing using both my legs and my arms. Since the...
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    Brainstorm Nurown 'Right to Try' participant shares progress

    For anyone interested to search Matt Bellina posted publicly on his facebook standing without using his hands for what he says is the first time in 2 years.
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    Brainstorm Nurown 'Right to Try' participant shares progress

    I just posted a link to a news story Clearwater. I have stayed relatively quiet on this forum because I feel my posts were causing tension. I am not trying to create any problems. I agree Laurie. Despite the best supportive care many of us have a minimum quality of life we are willing to...
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    Brainstorm Nurown 'Right to Try' participant shares progress

    https://5newsonline.com/2019/04/06/local-man-speaks-out-a-year-after-receiving-stem-cell-als-treatment/
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    Petition to FDA re NurOwn

    https://www.change.org/p/donald-j-trump-fda-approval-for-life-saving-nurown-for-als-patients
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    Brainstorm Nurown 'Right to Try' participant shares progress

    I'm trying to do what I can and do my part. I've always been a private person regarding my fight with ALS because I was made to feel hopeless from the day I was diagnosed. I never bring this up, but I was a physician in my former life (pre-ALS) diagnosed at 35. I trained at a highly...
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    Brainstorm Nurown 'Right to Try' participant shares progress

    I was diagnosed in 2011 and since then have looked at forums with titles like 'ALS Drug Trials' searching for hope and positive news. It's been a very depressing and hopeless search for a lot of years. I'm sorry if some don't like to hear about this, but my hope is there are some like minded...
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