ActUp MS!
There are two GLARING issues here with MS that I see. One is that the figure of 400,000 is grossly underrepresented for the number of actual cases in the U.S. This was commented on at the annual MS Society dinner in Philadelphia by a neurologist who stated that the number of cases of successful disability claims for MS far eclipsed 400K. We need to get accurate figures so that more funding can be allocated to R&D as well as social services. Of course, not everyone with MS is on SSDI, so the numbers are probably even higher!
During the AIDS crisis people took to the streets, demanding that drugs be expedited down the pipeline. They got what they wanted, and now their lifespans are almost that of those who have never been exposed to HIV. Marti Nelson used their paradigm to try to gain access to the hormone positive-based breast cancer drug Her-2. She died six days before she was granted her request. Consider the below, a durable one-time treatment that *reverses* disability! We all deserve access to drugs and treatments that can improve our quality of life. The public perception is that you can live with it. My CPA literally said this to me. Is this living, not being able to enjoy sex or use the toilet well or think or speak articulately or run? If you can prop yourself up it's Hallelujah, but NO, we are all circling the drain inside and after ten years many of us will be SPMS and it will be TOO LATE. I know what my QoL was before and it enrages me that people tell me I am fine.
Are you excited by Ocrelizumab? I'm not! Another expensive, immune modulating (*cough cough* suppressing) drug that tethers you to an IV, too risky for the RA crowd to take but justified for us because we can't get a brain/spine replacement. Same level of relapse reduction as DF. Speaking of which, we already gamble with PML, liver damage, and cancer day in and out with these drugs. The patient outcry over Tysabri should put everyone on notice that we are not a risk-adverse group, and that this disease really sucks!
We need more ads with people trapped in filth covered Lucite boxes, screaming and pounding in the dark, after which the camera pans out to a woman immobile in a wheelchair. You don't like it Australia, well too bad, you should try living it! I watched an interview with Annette Funicello two days ago from 1995. She said, "I'm not worried about it because a cure is right around the corner." On the sidebar were videos with her twenty years later, dying from it. This isn't a job for positive thinking, this is a job for action. If you don't have the energy, certainly the people around you who love you and who miss having all of you there will want to fight. The CDC/NMSS should get a new data set, and as the article below says that some are granted access to this one-time treatment on a compassionate basis, we are all deserving of compassion!
http://www.healthline.com/health-new...ility-012215#1
During the AIDS crisis people took to the streets, demanding that drugs be expedited down the pipeline. They got what they wanted, and now their lifespans are almost that of those who have never been exposed to HIV. Marti Nelson used their paradigm to try to gain access to the hormone positive-based breast cancer drug Her-2. She died six days before she was granted her request. Consider the below, a durable one-time treatment that *reverses* disability! We all deserve access to drugs and treatments that can improve our quality of life. The public perception is that you can live with it. My CPA literally said this to me. Is this living, not being able to enjoy sex or use the toilet well or think or speak articulately or run? If you can prop yourself up it's Hallelujah, but NO, we are all circling the drain inside and after ten years many of us will be SPMS and it will be TOO LATE. I know what my QoL was before and it enrages me that people tell me I am fine.
Are you excited by Ocrelizumab? I'm not! Another expensive, immune modulating (*cough cough* suppressing) drug that tethers you to an IV, too risky for the RA crowd to take but justified for us because we can't get a brain/spine replacement. Same level of relapse reduction as DF. Speaking of which, we already gamble with PML, liver damage, and cancer day in and out with these drugs. The patient outcry over Tysabri should put everyone on notice that we are not a risk-adverse group, and that this disease really sucks!
We need more ads with people trapped in filth covered Lucite boxes, screaming and pounding in the dark, after which the camera pans out to a woman immobile in a wheelchair. You don't like it Australia, well too bad, you should try living it! I watched an interview with Annette Funicello two days ago from 1995. She said, "I'm not worried about it because a cure is right around the corner." On the sidebar were videos with her twenty years later, dying from it. This isn't a job for positive thinking, this is a job for action. If you don't have the energy, certainly the people around you who love you and who miss having all of you there will want to fight. The CDC/NMSS should get a new data set, and as the article below says that some are granted access to this one-time treatment on a compassionate basis, we are all deserving of compassion!
http://www.healthline.com/health-new...ility-012215#1
)! 
Comment