Monday, June 18, 2012

Research Study Update

Chris had his Multiple Sclerosis Research Study appointment today. This is the appointment where they get Chris to do a bunch of tests to determine the progression or improvement of his disease.

We had good news and bad news.

Good news. Chris is still doing great. No signs of any disease progression, which is the same as all other transplant patients, and small signs of improvement. He had an EDSS score of 2.0 at his last appointment in December, and one neurologist even considered giving him a 1.5. His official score is still a 2.0, but in my mind he is more like a 1.75 (not a real score, but since he was borderline I think they need have a bigger range).

Bad news: Since the MS Society of Canada did not renew its grant for its long-term research study, the formal research study will end this year and this was Chris' last research study appointment. We were assured that they would continue to apply for funding, and they would continue to see Chris to track his progress, but the research study portion will end.

It is really disappointing news seeing a procedure that has been so successful (all patients have seen a halt in their MS progression) lose funding. Knowing the long-term effects and benefits of this procedure is so important and it really seems like such a shame that this will longer happen. For us, since we live in Ottawa, this will not make that big of a difference. Chris will continued to be monitored. However,patients that need to travel to Ottawa from across Canada, including PEI and British Columbia, will now need to travel on their own dime if they want to continue to see Dr. Freedman and the MS transplant team.

We also found out that the MS research team also did not get funding for a different kind of stem cell therapy that uses the patient's own mesenchymal stem cells. The benefits of this therapy is that it does not require the patient to undergo intensive chemotherapy and is much safer than the transplant. There have been several clinical trials of this therapy in Europe, but unfortunately, it is not being researched in Canada.

What makes this so frustrating is that while these research studies are not getting funding, the MS Society and provincial governments are throwing tons of money at CCSVI, which has had nowhere near the success rates. I can completely understand why MS patients want CCSVI to be the cure, and at one point Chris was on a waiting list to get the veins in his neck scanned to see if this was the cause of his MS.

However, after reading so many studies that do not support this treatment having any lasting benefits, including the Newfoundland study this month, and hearing from other people through our blog who have underwent the procedure and had limited or no improvement, I am convinced that it is not the "liberation procedure."

Okay, my rant is over.

Back to the good news. Chris is continuing to impress the MS research team with how well he is doing post-transplant. And we will continue to update the blog with his progress, with or without the continuation of the research study.

*Editor's Note: If you are extremely wealthy person reading this blog and wondering what to do with all of your money, I would suggest contacting and donating all of your money to the Multiple Sclerosis Research Unit at the Ottawa Hospital.

4 comments:

  1. Thank you for your blog. I m undergoing to omopoietic stem cell transplant next week. Can u please share with me his progress from 2012 until now? Thank u and good luck!!

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  2. Interesting that you said that the MS Society was throwing "tons of money" at CCSVI research.

    Actually, I think you should pull the financials at the MS Society of Canada. They are available at the Canada Revenue Agency website under charity listings.

    My comment has nothing to do with CCSVI or any other research that the MS Society of Canada sponsors. It has to do with where the money goes at the MS Society.

    Each year, the research envelope decreases, yet the salary envelope increases. Last year (2013), the MS Society brought in roughly $50 million of which $20 million went to FUNDRAISING COSTS, and another $20 million went to SALARIES.

    Funny how the salaries increased by a million from 2012-2013 but RESEARCH money actually DECREASED.

    Rather than being mad at the pittance of $300,000 over two years given to CCSVI, I would be outraged at the fact that the MS Society pays more than $350,000 to their CEO and President. If you don't believe me, check out their T-3010 Charity forms, Schedule 3 (Compensation). The information is there. I think the MS Society should be pressured to stop paying 80% of their revenues in SALARIES and FUNDRAISING expenditures.....that's the REAL problem.

    It's also the reason why as a former Chapter President, I no longer believe that they are being faithful to their mission to "END MS". The Society has become more of a lucrative business to pay for life in the Ivory Tower.

    Here is the link to the numbers the Society filed themselves to the Canada Revenue Agency. Check out Schedule 6 (Detailed Financial Information), and Schedule 3 (Compensation). I believe your eyes will be opened wide as to their funding of research.

    http://www.cra-arc.gc.ca/ebci/haip/srch/t3010form23-eng.action?b=107746174RR0001&fpe=2013-12-31&n=MULTIPLE+SCLEROSIS+SOCIETY+OF+CANADA+%2F+SOCI%C3%89T%C3%89+CANADIENNE+DE+LA+SCL%C3%89ROSE+EN+PLAQUES&r=http%3A%2F%2Fwww.cra-arc.gc.ca%3A80%2Febci%2Fhaip%2Fsrch%2Fbasicsearchresult-eng.action%3Fk%3Dmultiple%2Bsclerosis%2B%26amp%3Bs%3Dregistered%26amp%3Bp%3D1%26amp%3Bb%3Dtrue

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  3. Thank you so do much for blogging while going through such an ordeal. I too have SPMS and have gone through 5 DMDs. I am looking at HSCT and anything I can learn is very valuable to me.

    Tell me, how are you and Chris doing now?

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