tag:blogger.com,1999:blog-62716487695149713.comments2023-10-09T02:33:17.014-04:00ALS ADVOCACYALSadvocacyhttp://www.blogger.com/profile/15638650524805735994noreply@blogger.comBlogger526125tag:blogger.com,1999:blog-62716487695149713.post-66055979826885842482017-08-08T15:09:32.226-04:002017-08-08T15:09:32.226-04:00One thing you can always count on. Nothing. One thing you can always count on. Nothing. Anonymoushttps://www.blogger.com/profile/01051055637214556275noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-54211358906478573112017-07-31T15:38:59.757-04:002017-07-31T15:38:59.757-04:00You may have learned this by now, but even though ...You may have learned this by now, but even though FOIA laws vary state, they all have a strict time-frame limitation, and a general declaration in the state law that says "an organization may not rely on record-keeping inefficiencies to thwart an otherwise proper request". I've tried to reach you but haven't been successful. There are other concerns that should be raised as well, and I think they would be heard by a wider audience if we combined efforts.Matthttp://www.verdantlab.com/noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-27151054970241196602017-05-28T00:24:21.151-04:002017-05-28T00:24:21.151-04:00I used to work in drug research as a PhD. Mr Golds...I used to work in drug research as a PhD. Mr Goldstein is right in that the small target group may be identified by looking at the exclusion criteria of the Japanese trial. But there is maybe a third elephant in the room which nobody seems to have mentioned. If you study the first Japanese trial which failed to show efficacy (from which they then data-mined to choose the subjects for the second trial which did show efficacy) glucose appears in the urine. That could point to kidney failure or pancreas issue - a big elephant if true. What I cant figure is that everyone is delirious about Edaravone @ $12,000 / month for 33% decline reduction, whereas RCH4 was free of charge for years, and 63% decline reduction (twice the efficacy of Edaravone) - yet the ALS community has killed RCH4 and the charity who supplied it by untruthfully calling them a scam.Gerti Andrewsnoreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-53068554791099075792017-05-15T08:36:34.643-04:002017-05-15T08:36:34.643-04:00Cathy, thanks for the post and commenting on Preci...Cathy, thanks for the post and commenting on Precision Medicine. The trials in Japan focused on a responder group - 24 months from disease onset, 80%+ FVC, 2 pts or more on every ALSFRS-R question. That is a pretty darn precise responder group - dont you think? I think that the most immediate use of precision medicine programs would be to aide people with ALS in tracking their disease progression - so they can be empowered to determine if a treatment they are pursuing (either approved, in trial or DIY) is impacting their disease in a positive way. In the longer term - a period of time undefinable as science happens at its own pace relative to variables including intuition/technology/skill//luck/resources - the aim is to be able to "diagnosis" specific types of ALS and direct those people to specific (precise) treatments, but that's further off then anyone wants for today's people with ALS. Anyways, thanks for writing this post and I wanted to offer up my personal thoughts. Robert Goldsteinhttps://www.blogger.com/profile/11764937850496432546noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-10304045682519787212017-04-29T19:39:21.987-04:002017-04-29T19:39:21.987-04:00All extremely pertinent and valuable questions tha...All extremely pertinent and valuable questions that everyone should want answered. Hard to comprehend why a community manager for the FB group would pick and choose who could be involved as long as you were within the posted terms of posting unless they are trying to suppress conversation within the ALS Community. The ALS Community: Patients, Advocates and Familes win when there is transparency.Susanhttps://www.blogger.com/profile/02560093517195597266noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-75316694179609298542017-03-12T09:38:13.022-04:002017-03-12T09:38:13.022-04:00Thank you for voicing exactly what we are feeling ...Thank you for voicing exactly what we are feeling in the ALS community, frustration, anxiety and lack of hope and that's just in regards to clinical trials!!!Anonymoushttps://www.blogger.com/profile/06196977938450693339noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-81979490302855847362016-12-20T15:45:01.875-05:002016-12-20T15:45:01.875-05:00I have been following this blog for a while now an...I have been following this blog for a while now and i decided to share my story on how i survived and got a cure from ALS which would have maybe by now killed me. I was diagnosed with ALS in 2013 and it came with symptoms like overall weakness and i could not swallow and i ended up in a wheelchair though my doctor tried to put me on occupational therapy and physiotherapy but none seemed to give a relief as my condition grew worse in 6 months. I was lucky to have contacted Dr. Joseph and used his herbal medicine that treated me and gave me life, just 3 months of using the medicine which spans for 6 months positive improvements were visible, like my speech, all movements. A few years have gone by and i am still very much alive and healthy. Do not give up, you too can get a cure you can contact him directly on the contact below (josephalberteo @ gmail. com) for advise and effective solution. I pray you get cured soon.Anonymoushttps://www.blogger.com/profile/17036870706772886334noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-9622400776135058952016-11-07T09:30:49.541-05:002016-11-07T09:30:49.541-05:00Medicare payment and reimbursement
Outpatient ther...Medicare payment and reimbursement<br />Outpatient therapy can be billed for occupational, physical and speech therapy rendered within the SNF.Medicare payment and reimbursementhttp://glendanelson2016.wixsite.com/medicinenoreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-20024174489349559382016-10-03T18:20:11.826-04:002016-10-03T18:20:11.826-04:00And thank you, for being you and being there and d...And thank you, for being you and being there and doing your part to make it awesome too. AfternoonNappernoreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-4242414601980620342016-07-29T00:52:47.075-04:002016-07-29T00:52:47.075-04:00Well said. I appreciate more attention was made fo...Well said. I appreciate more attention was made for the IBC - to help bring in more research monies. I don't appreciate that they don't focus on research monies being applied to potential treatments and cures. zzipperhttps://www.blogger.com/profile/15940072859895905447noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-56432432386254613562016-06-20T19:10:20.942-04:002016-06-20T19:10:20.942-04:00Emails have been sent. Thank you for making it ea...Emails have been sent. Thank you for making it easy for us to help, delineating our key contacts at the end of the post. I've shared it with my peers.Vhttps://www.blogger.com/profile/09008604024108840036noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-44348950935626791852016-06-18T11:41:33.034-04:002016-06-18T11:41:33.034-04:00Here's the debrief from Angelina Fanous @notso...Here's the debrief from Angelina Fanous @notsovanilla https://youtu.be/NSI_kEU1JAs Please watch and act. ALSadvocacyhttps://www.blogger.com/profile/15638650524805735994noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-60709811620117831332016-06-12T10:13:55.459-04:002016-06-12T10:13:55.459-04:00Thanks. We usually loosely talk about around 6000...Thanks. We usually loosely talk about around 6000 US deaths annually from ALS. Death certs are coded at the G12.2 MND level, so we can't get an exact number for the ALS subset. The CDC Wonder database shows MND as an underlying cause on 7271 death certs in 2014. My 600 number may be conservative for 5 weeks (approximately a tenth of a year).ALSadvocacyhttps://www.blogger.com/profile/15638650524805735994noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-62614389569259540002016-06-12T07:53:40.093-04:002016-06-12T07:53:40.093-04:00Thank you for posting this! How/where did you get ...Thank you for posting this! How/where did you get the figure of 600? Is it a projection based on the known mortality rates of ALS?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-58737678279793039582016-05-16T20:26:11.096-04:002016-05-16T20:26:11.096-04:00Horribly frustrating. If I could scream I would bu...Horribly frustrating. If I could scream I would but I have ALS.Saramyhttps://www.blogger.com/profile/09792951871541146699noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-29829527076743682282016-04-27T20:25:51.878-04:002016-04-27T20:25:51.878-04:00This comment has been removed by a blog administrator.Micushttps://www.blogger.com/profile/08767786091454073780noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-32569921885076633312016-04-27T11:56:33.235-04:002016-04-27T11:56:33.235-04:00This comment has been removed by a blog administrator.tomhttps://www.blogger.com/profile/09886995566115512797noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-679780598968429662016-04-01T15:04:36.268-04:002016-04-01T15:04:36.268-04:00Thank you for this article and the focus to make a...Thank you for this article and the focus to make a difference with these trials, I hope it reaches out to many people. I clearly remember when Ben was going through this Trial. We had a family reunion during this time, Ben was so excited, he was able to drink his morning coffee, share a beer with his brothers and hike to his favorite Sedona spot. Ben said "for the first time, the word hope is in our vocabulary". But to be given hope and then have it just taken away is beyond heartbreaking. This also gave me hope and unfortunately I was one who could not bring myself to face the realty of ALS, seeing him in such great condition and spirits made me crawl further into my own unrealistic reality that a cure was found and that I would have Ben in my life forever. But the trail had ended and so did his access to NP001, he new that by the time they launched the next phase he would be to far advanced for any study, so they started their own. I went to visit Ben months later, we would text each other all the time, you would have never guessed how much he had declined by his way of communication, it was a wake up call when I went to visit him, we always got in trouble as kids for uncontrollable laughing at the most inappropriate times, I remember a moment when he went to get up and I made a comment and he looked at me and tried to smile, this is when we would usually start to laugh, and then sent me a text, you cant make me laugh I will choke ,I held back my tears and replied, ok I wont, the sadness and reality that we would never be able to laugh together again in this lifetime and that no cure was coming in time hit me like a ton of bricks, I went for a walk and cried it out. I did not realize the extent of his impact in DYI and the rights for ALS patients, to conduct these in a safe way that they choose, safe and possibly with the help of doctors, sharing detailed information so that someday a pattern would be discovered And also his efforts to make a change in trials and how they are handled, until after he passed. It wasn't about him gaining credit for anything it was about him doing all he could to make a difference before his life was taken away without choice. To walk into a room and see Ben, nothing but bones, to hold him in my hands as he suffocated and starved to death, to be present when he took his last breath, changes you and the way you handle life , I only wish that someday this is something that no family member has to go through. My heart goes out to all with ALS and their families. "wallowing serves no practical use, so I keep focus on the task at hand" Ben Harris.<br /><br />Thank you for your focus.<br /><br />Amy Harris<br />amy harrishttps://www.blogger.com/profile/06947764839802075924noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-15991119944768821352016-03-29T18:55:13.132-04:002016-03-29T18:55:13.132-04:00I am stunned and in shock that something like this...I am stunned and in shock that something like this can happen! My dear friend died at the age of 40 from ALS 6 months ago. A three year battle that no one should ever have to go through. <br /><br />As a medical professional myself, this is unacceptable and unethical. My heart breaks, again, knowing that my friend and many others may have had an opportunity to a better quality and longer of life. What a travesty!<br /><br />Please share this everywhere!Anonymoushttps://www.blogger.com/profile/06884657528944702683noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-74362076615064584802016-03-23T01:19:29.700-04:002016-03-23T01:19:29.700-04:00So very terrible, so very wrong!
I have a sister t...So very terrible, so very wrong!<br />I have a sister that was diagnosed with AlS, two weeks ago!<br />My heart is broken in two!<br /><br />I am sorry for the loss of these two good men, may they R.I. P Margiehttps://www.blogger.com/profile/14433759763753850718noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-65875724218976705292016-03-20T16:14:44.984-04:002016-03-20T16:14:44.984-04:00I am one of the ones who couldn't join the tri...I am one of the ones who couldn't join the trial because I lived with ALS too long (6 years at the time). I asked for Compassionate Use access, but my clinic is unwilling to put their and their doctor's perceived reputation at risk "supporting" an unproven drug. I then attempted to purchase WF10, but could not find a professional to administer the infusions of a drug not approved by the FDA.<br />My experience following many promising therapies - arimoclomol, lithium carbonate, CoQ10, Diaphragm Pacing System, Human Growth Factor, nilotinib, among others - is that the processes are set up to protect providers, not serve patients or do real science. ALSFRS and Forced Vital Capacity, the two most common trial indicators, are very flawed measurements.Anonymoushttps://www.blogger.com/profile/07109520885034570588noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-19250547481729574432016-03-19T12:53:09.990-04:002016-03-19T12:53:09.990-04:00This is an important post. This needs to be made ...This is an important post. This needs to be made even more public! Tracy Codyhttps://www.blogger.com/profile/03665509401677897703noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-20540366061541345582016-02-25T21:24:30.115-05:002016-02-25T21:24:30.115-05:00One reason i didn't write to Sen. Johnson was ...One reason i didn't write to Sen. Johnson was my utter disappointment with 2013 fda meeting. My wife and i made huge effort to get there, only to have two commissioners sleep through my presentation. Why waste my time with Johnson? Anonymoushttps://www.blogger.com/profile/03343754654359190143noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-68512085086619998312016-01-31T19:20:49.609-05:002016-01-31T19:20:49.609-05:00I have certainly come across lots and lots of ALS ...I have certainly come across lots and lots of ALS articles but it is rare to find something that redefines ALS from the common “pretty linear downhill path” myth that many people out there are exposed to. In as much as it may sound understandable not to understand the language of neurologists, I still think you did a good job with your expose’.<br /><br /><a href="http://guardianpoolsau.blogspot.com/2015/12/should-you-choose-lap-pool-or-plunge.html" rel="nofollow">Bernice Cunningham @ Guardian Industries</a>Bernice Cunninghamhttps://www.blogger.com/profile/11752513421633442681noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-7619471355219892482016-01-16T09:17:30.119-05:002016-01-16T09:17:30.119-05:00You speak the truth, Thank you for writing.You speak the truth, Thank you for writing.Anonymousnoreply@blogger.com