Naar homepage     
Chronische Cerebro-Spinale Veneuze Insufficiëntie
Aanmelden op het CCSVI.nl forum
Lees Voor (ReadSpeaker)    A-   A+
Over CCSVI.nl | Zoeken | Contact | Forum
CCSVI.nl is onderdeel van de
Franz Schelling Website
meer informatie
  
Saturday, November 19, 2011 5:00 AM | JENNA Volg link

What is your reaction to the Desired Outcome 1 and issues identified with it? 
Desired Outcome 1: With people living with MS at the center of our work, the MS Society will deliver high-quality service and program offerings, including influencing positive change through government advocacy, that reflect the unique needs of the communities and people we serve. 


It is time you represent our issues not your wallets.  We have donated enough to your pockets; it is time to support us when we need your support. The CCSVI treatment is needed in Canada, and you are not doing much to help us to get this going. The main concern of yours is how much money you are not going to have.  Well that money comes from me, my family, my friends and the friends of the friends.  They don't want to support you any more, as you do not support me, the MS person who happens to have also a problem with my veins. I had the problem with my veins far longer than I have MS.  I was diagnosed with Fibromyalgia and at the time I could have had any test I wanted.  All changed since the diagnoses changed. And you are a part of my problem.  You take my money and you spend it the way you feel like it, you don't listen to us the MS persons, you don't recognize our needs, you tell us what we need. We might be sick but we are not stupid! It is time to change the tactics and hear our voice for once.  We want the testing and treatment for CCSVI at home.  We know this will not cure us of MS but for some of us it will improve our quality of life. We have the right to have this chance, and you are taking this away from us.  Who do you think you are, to make such decisions on our behalf?  We did not ask you for your "intervention" we asked you for your help, but you obviously have no clue how to do so. I will spell it for you – “We want a free access to CCSVI diagnostics and treatment if needed here in Canada” for all people regardless the pre-medical condition.  I hope you got it.


What solutions can you think of to help us achieve Desired Outcome 1?


Stop spending our many on your needs and start supporting MS patient needs. Your administration cost are "horrific", your wages are higher than any public sector employee. You spend our money on things we do not approve. You don't support any CCSVI studies, or advocate on our behalf to speed up the process and get on with it. Open your eyes; you might not be here in 5 years. You need us more than we need you!!!


Desired Outcome 2: The MS Society will have a research program that can sustainably fund the best Canadian-led research focused on MS. The research we fund will have direct linkage to enhancing quality of life for people living with MS today and finding the cause of and, ultimately, a cure for MS. 


Wrong Desire, wrong studies, wrong research, and wrong doctors running the show. Enhancing the quality of life with a help of wheelchair versus CCSVI treatment. Want comment!


What solutions can you think of to help us achieve Desired Outcome?


CCSVI Study through diagnostic research and treatment in Canada Now.


Involve Dr. Sandy McDonald and Dr. Mark Haacke, they know the problem, they are the experts by now.


Desired Outcome 3: The MS Society will have a revenue generation and spending model that is sustainable over the long-term and maximizes our ability to deliver on our mission. 


Your desire 3 is based on the wrong assumption. You still think we will give you our money for you to spend or manage.


What solutions can you think of to help us achieve Desired Outcome 3?


Again, support our needs, listen to what we say and hear us.


What is your reaction to the Desired Outcome 4 and issues identified with it? Desired Outcome 4: The MS Society will have an effective and efficient model of operation and governance that best serves those living with MS and meaningfully engages volunteers and staff in fulfilling our mission. We will be united, streamlined and respectful that some functions are uniquely executed locally while others are best carried out regionally or nationally. Accomplishing this outcome is vital to the success of the MS Society:


Desire #4 How are you planning to identify the issue of effectiveness and efficiency; you assume we will trust you how you run the Society. We do not. At least not any more!!!


What solutions can you think of to help us achieve Desired Outcome 4?


I have no idea. I think you have outlived your purpose.


Do you feel any desired outcomes are missing? Please elaborate, including offering proposed solutions to any new desired outcome.


Our desire is to have access to CCSVI testing and treatment in Canada!!!