Today is World MS Day. Take a minute or two to watch the video set to U2's Beautiful Day, and take a second minute to learn about the disease if you can.
It's a good day when...
I get to drive a 23 foot Boston Whaler!
Thursday, May 14, 2009
May MS Awareness month
May MS Awareness month
The MS Society is posting a fact about MS every day this month. Here is todays:
Every day, three more people in Canada are diagnosed with MS.
And this is where the money goes!
Every day, three more people in Canada are diagnosed with MS.
And this is where the money goes!
I always like to know where the money goes that I raise for the MS Society of Canada. And here it is! I couldn't be happier with what they're doing. Training the future as an investment for finding that cure warms my heart.
"Toronto, May 14/2009 - In a move intended to significantly accelerate the pace of MS research, the Multiple Sclerosis Society of Canada announced the establishment of five research and training centres involving over 100 established scientists and 250 trainees.
The entities, dubbed endMS Regional Research and Training Centres (RRTC), come less than one year after the MS Society launched a major fundraising initiative to alter the research landscape in Canada.
“The goal of these centres is to boost our capacity to conduct MS research through training of the next generation of MS researchers,” says Yves Savoie, president and chief executive officer of the MS Society of Canada.
The five centres are part of the endMS Research and Training Network, a collaboration of MS researchers and trainees across Canada. It is funded entirely by the MS Society of Canada and its goal is to accelerate the pace of discovery so that an end to MS is found as quickly as possible. The establishment of the five RRTCs serves as a key lynchpin in achieving this goal.
Each centre is comprised of multiple academic institutions and teaching hospitals within a geographic region: Western-Pacific, covering BC and Saskatchewan; Alberta; Manitoba-Ontario, excluding Ottawa; Quebec-Ottawa; and Atlantic, covering the four Atlantic provinces.
For the next three years, each centre will receive $100,000 per year to fund collaborative training and research activities.
With over 100 researchers and 250 trainees involved, the sheer number of individuals connected through one network is unprecedented in Canadian MS history. Fifty four institutions are represented, stretching from Newfoundland’s MS Clinic at Memorial University to the three campuses of the University of British Columbia.
“The five RRTCs cross an impressive latitude of institutions and clinics. Their establishment represents a new genesis of collaborative and highly focused activity designed to end multiple sclerosis,” says Savoie.
Researchers and trainees affiliated with each RRTC will collaborate through conferences, regional workshops, online tools and inter-lab exchanges through which trainees will leave their host institution for a set period of time to train at another within the Network.
“These centres will provide a structure that will allow us to identify new and established members of the research community with whom we can develop new approaches to solve complex problems,” says Dr. Jack Antel, scientific director of the endMS Research and Training Network and a neurologist at the Montreal Neurological Institute. “We hope to attract the best trainees with a strong educational environment and an impressive capacity to interact with peers and mentors from many disciplines.”
In September of 2008, the MS Society launched the endMS campaign with a goal of raising $60 million to fund research activities that will end multiple sclerosis. Over $32 million has been raised. Visit www.endMS.ca for more details or to donate to the effort.
Tuesday, May 12, 2009
Ouch
"Toronto, May 14/2009 - In a move intended to significantly accelerate the pace of MS research, the Multiple Sclerosis Society of Canada announced the establishment of five research and training centres involving over 100 established scientists and 250 trainees.
The entities, dubbed endMS Regional Research and Training Centres (RRTC), come less than one year after the MS Society launched a major fundraising initiative to alter the research landscape in Canada.
“The goal of these centres is to boost our capacity to conduct MS research through training of the next generation of MS researchers,” says Yves Savoie, president and chief executive officer of the MS Society of Canada.
The five centres are part of the endMS Research and Training Network, a collaboration of MS researchers and trainees across Canada. It is funded entirely by the MS Society of Canada and its goal is to accelerate the pace of discovery so that an end to MS is found as quickly as possible. The establishment of the five RRTCs serves as a key lynchpin in achieving this goal.
Each centre is comprised of multiple academic institutions and teaching hospitals within a geographic region: Western-Pacific, covering BC and Saskatchewan; Alberta; Manitoba-Ontario, excluding Ottawa; Quebec-Ottawa; and Atlantic, covering the four Atlantic provinces.
For the next three years, each centre will receive $100,000 per year to fund collaborative training and research activities.
With over 100 researchers and 250 trainees involved, the sheer number of individuals connected through one network is unprecedented in Canadian MS history. Fifty four institutions are represented, stretching from Newfoundland’s MS Clinic at Memorial University to the three campuses of the University of British Columbia.
“The five RRTCs cross an impressive latitude of institutions and clinics. Their establishment represents a new genesis of collaborative and highly focused activity designed to end multiple sclerosis,” says Savoie.
Researchers and trainees affiliated with each RRTC will collaborate through conferences, regional workshops, online tools and inter-lab exchanges through which trainees will leave their host institution for a set period of time to train at another within the Network.
“These centres will provide a structure that will allow us to identify new and established members of the research community with whom we can develop new approaches to solve complex problems,” says Dr. Jack Antel, scientific director of the endMS Research and Training Network and a neurologist at the Montreal Neurological Institute. “We hope to attract the best trainees with a strong educational environment and an impressive capacity to interact with peers and mentors from many disciplines.”
In September of 2008, the MS Society launched the endMS campaign with a goal of raising $60 million to fund research activities that will end multiple sclerosis. Over $32 million has been raised. Visit www.endMS.ca for more details or to donate to the effort.
Ouch
So, maybe I spoke too soon about my latest attack being all gone. I'm very functional now. I can walk 5kms, I'm back hiking. See! I went to Buntzen Lake.
My legs aren't just giving out on me anymore. However... I hurt. A lot. All the time. Mostly on my right side. I went for a massage yesterday and I was brought to tears with a single light touch. That's something that just doesn't happen. Something is just not right inside me. It's kinda like muscles all around my core are all seized up and have no more elasticity on my right side only. So when my massage therapist would usually dig in and loosen me up, he could barely touch me without me flinching from the severe pain. it was a gruelling session and I feel better, but already today, I'm feeling the seizing up setting in again. Sigh... I was reading some MS blog today and saw Brain Cheese talking about MS pain. It's the first time I've really thought that maybe I'm feeling pain from my MS. And quite frankly, I'd like for it to go away now. Anyone else experience this?
Saturday, May 9, 2009
Perfect place to be!
Thursday, May 7, 2009
Fast track approval for Fampridine
My legs aren't just giving out on me anymore. However... I hurt. A lot. All the time. Mostly on my right side. I went for a massage yesterday and I was brought to tears with a single light touch. That's something that just doesn't happen. Something is just not right inside me. It's kinda like muscles all around my core are all seized up and have no more elasticity on my right side only. So when my massage therapist would usually dig in and loosen me up, he could barely touch me without me flinching from the severe pain. it was a gruelling session and I feel better, but already today, I'm feeling the seizing up setting in again. Sigh... I was reading some MS blog today and saw Brain Cheese talking about MS pain. It's the first time I've really thought that maybe I'm feeling pain from my MS. And quite frankly, I'd like for it to go away now. Anyone else experience this?
Perfect place to be!
Fast track approval for Fampridine
They got it!
"Acorda is racing Biogen Idec Inc., Merck KGaA and Novartis AG to sell the first pill for multiple sclerosis, a disease now managed by injected medicines with $6 billion a year in worldwide sales. Acorda said the FDA will expedite its review of Fampridine as a “priority,” a process that typically takes six months, compared with 10 months for typical new drug applications.
“The priority review is a positive surprise,” said Phil Nadeau, an analyst with Cowen & Co. in New York, in a note to clients today.
Acorda received a “refuse to file” letter from the FDA on March 30. The agency sends such letters to companies whose new drug applications are incomplete, according to the FDA Web site."
Tuesday, May 5, 2009
Risk of Leukemia with Mitoxantrone Higher Than Thought
"Acorda is racing Biogen Idec Inc., Merck KGaA and Novartis AG to sell the first pill for multiple sclerosis, a disease now managed by injected medicines with $6 billion a year in worldwide sales. Acorda said the FDA will expedite its review of Fampridine as a “priority,” a process that typically takes six months, compared with 10 months for typical new drug applications.
“The priority review is a positive surprise,” said Phil Nadeau, an analyst with Cowen & Co. in New York, in a note to clients today.
Acorda received a “refuse to file” letter from the FDA on March 30. The agency sends such letters to companies whose new drug applications are incomplete, according to the FDA Web site."
Risk of Leukemia with Mitoxantrone Higher Than Thought
Eeek. This is why clinical trials have to happen on all these drugs.
"The risk of developing leukemia as a side effect of a drug for multiple sclerosis (MS) is higher than previously reported, according to a study presented as part of the Late-breaking Science Program at the American Academy of Neurology's 61st Annual Meeting in Seattle, April 25 - May 2, 2009.
Mitoxantrone is an immunosuppressant drug approved by the FDA for treatment of several forms of advancing MS. It is one of only two drugs that has been shown to benefit people with secondary progressive MS who are having attacks. However, the drug can cause heart damage at high total doses. Due to this, the lifetime cumulative dose is equal to about eight to 12 doses over two to three years.
Previous studies have also shown that the people with MS treated with the drug have an increased risk of developing leukemia. Those studies showed that acute leukemia occurred in .07 percent to .25 percent of MS patients taking mitoxantrone. Today's retrospective study of 2,854 Italian people with MS receiving the drug found that leukemia occurred in .74 percent.
"This rate is significantly higher than what has been previously reported," said study author Vittorio Martinelli, MD, of University Vita-Salute in Milan, Italy. "The potential risk of leukemia should be carefully considered against the potential benefits of mitoxantrone treatment on every single patient."
The study participants all had at least one cycle of mitoxantrone treatment and were observed for at least one year. A total of 21 people developed leukemia, eight of whom died. The people who developed leukemia had more treatment cycles than those who did not develop leukemia -- 8.6 cycles versus 7.2 cycles. They also had a greater cumulative dose of mitoxantrone.
The leukemia occurred an average of three years after the first use of the drug and an average of 18 months after the end of treatment.
"It is vital that all MS patients treated with mitoxantrone undergo prolonged and careful hematological follow-up to check for acute leukemia," Martinelli said."
Update
"The risk of developing leukemia as a side effect of a drug for multiple sclerosis (MS) is higher than previously reported, according to a study presented as part of the Late-breaking Science Program at the American Academy of Neurology's 61st Annual Meeting in Seattle, April 25 - May 2, 2009.
Mitoxantrone is an immunosuppressant drug approved by the FDA for treatment of several forms of advancing MS. It is one of only two drugs that has been shown to benefit people with secondary progressive MS who are having attacks. However, the drug can cause heart damage at high total doses. Due to this, the lifetime cumulative dose is equal to about eight to 12 doses over two to three years.
Previous studies have also shown that the people with MS treated with the drug have an increased risk of developing leukemia. Those studies showed that acute leukemia occurred in .07 percent to .25 percent of MS patients taking mitoxantrone. Today's retrospective study of 2,854 Italian people with MS receiving the drug found that leukemia occurred in .74 percent.
"This rate is significantly higher than what has been previously reported," said study author Vittorio Martinelli, MD, of University Vita-Salute in Milan, Italy. "The potential risk of leukemia should be carefully considered against the potential benefits of mitoxantrone treatment on every single patient."
The study participants all had at least one cycle of mitoxantrone treatment and were observed for at least one year. A total of 21 people developed leukemia, eight of whom died. The people who developed leukemia had more treatment cycles than those who did not develop leukemia -- 8.6 cycles versus 7.2 cycles. They also had a greater cumulative dose of mitoxantrone.
The leukemia occurred an average of three years after the first use of the drug and an average of 18 months after the end of treatment.
"It is vital that all MS patients treated with mitoxantrone undergo prolonged and careful hematological follow-up to check for acute leukemia," Martinelli said."
Update
I don't think I posted anything about my latest attack and where I'm at with it. So... after being off work for 4 weeks in March I think I can say today that the attack is over. Phew! I don't believe I'm carrying any remnants with me. My legs work, no more giving out and I was able to do the 5kms walk at the MS walk! Fatigue stills seems to come and go as it usually does as does my numbness, but those are just status quo for me. So, let the hiking continue! The weather is certainly cooperating!