|
July 19th 2010
Ronn and I will be on a road
trip to Maryland 7/22-8.1to see family and friends and to eat blue crab,
if there are any available, since many come from the Gulf Coast (Don’t
tell anyone from Maryland that.) If you need me, my cell is 446-2990.
____________________________________
July 20—10:00 at La Hacienda.
Our meeting on “Cognition” will be presented by Connie Kay. This will be
an interesting, entertaining and important for caregivers as well as
those with MS.
July 27—10:30 Caregivers will
meet at La Hacienda.
_________________________________
August 3—11:30 We will meet for
lunch at Orange Blossom Country Club on the east side of Rte 441. RSVP
to
kathysunset@embarqmail.com or 751-0207.
August 10—9:30 We will meet at
Spanish Springs Lanes for Bowling and we go to lunch after bowling. Join
us for bowling or just for lunch.
August 17—10:00 We will meet
Dr. Smirnoff, neurologist, who has an office in The Sharon Morse
Building . He will introduce himself and tell us about his practice.
Steve Berkovitz will speak about public transportation available in The
Villages.
August 24—There will NOT be a
caregivers meeting. The meeting room is being used for another function.
___________________
De Burrows is now living in an
assisted care facility in Michigan near her family. Her home at 8301 SE
176 Lawson Loop is now for sale. It has 3 Brooms/2 Baths and has been
modified for accessibility. There is a pool with a ramp and rail for
access. Asking price $269,000; the Bond is paid off. If you are
interested, call Gerald Bowles at 753-4000
________________________________
Connie Kay is at home driving
her modified van and enjoying her new found independence.
Amy Judd is living with and
caring for Connie. Many of us have met Amy because she has been
attending MS functions. Amy would like to clean houses. Connie says she
is very thorough. If you would like her help, you can contact Amy at
753-4395.
__________________________________________
Warning: Ronn had an unpleasant
happening in July which required an evening in the ER and a night in the
hospital. Monday he had itchy blotches on his body. He took Benedryl
which didn’t stop the problem. The next morning in addition to the
original problem, the left side of his face and lips were swollen. He
saw a nurse practitioner in his doctor’s office who gave him 3
prescriptions. While he was waiting for the prescriptions the left side
of his tongue began to swell. She gave him a shot and sent him home with
instructions to go to the ER if his tongue swelled more. It did and we
went to the ER. The ER Dr. decided it was due to his blood pressure
medicine which is an ACE inhibitor. The doctor sees this 2-3 times a
week with the “pril” drugs among others. Ron was taking RamiPRIL. Our
son-in-law had three similar episodes and didn’t know what caused them.
He was on a different “pril” drug. This can happen several years after
beginning this medication as the body sets up a sensitivity to the drug.
This is similar to the person who eats seafood for thirty years and then
has an allergic reaction to shell fish.
_____________________________________
Information about Florida
Property Tax.
If you are disabled in a chair
and your entire household income from all sources is less that $25,300,
you do not have to pay property tax.
If you are a disabled veteran
who was disabled while you were in the service, you do not have to pay
property tax.
_______________________________
Medical equipment available:
There is a great amount of
medical equipment gathering at our house. I would like to find a storage
unit free or very cheap. If anyone has space in a locker which we might
share or a connection with a storage company which might donate space,
please call me. 750-6689
At our house we have: a
standard wheelchair, transfer chair, a sliding bench to transfer into
the tub, 2 twin-size washable soft, fleecy bed pads, a grabber, an
adjustable gold metal cane, a large seated walker, a regular walker, a
10-foot folding aluminum ramp, a raised seat for a commode, a bedside
commode/shower seat and an over-the-bed trapeze. If you can use any of
these items, pleeeeeese call.
June 13th 2010
Upcoming dates:
July 6—11:30
Luncheon at TGIF, Sumter Landing. RSVP
kathysunset@embarqmail.com or 751-0207
July 13—Bowling
9:30 Spanish Spring Lanes. We go to lunch after bowling. No reservation
needed.
July 20—10:00
Meeting at La Hacienda Center. Topic will probably be about cognition.
July 27—10:30 La
Hacienda Center Caregivers meeting.
August 3—11:30
Luncheon probably at Orange Blossom. I will confirm. RSVP to
Kathysunset@embarqmail.com or 751-0207
August 10—9:30
Bowling at Spanish Springs Lanes. (See above).
August 17—10:00
Surprise!
August 24—10:30 La
Hacienda Center Cargivers meeting.
_____________________________________
The MSVP
equipment locker (our guest room) is getting full again. We have a
transfer-to-tub attachment for the side of the tub, a transfer
chair, a large self-propelled wheel chair, one older type seated
walker and a regular walker. If you would like any of these items,
pleeeease contact me. I will happily deliver your item(s).
|
June 10, 2010
FDA Panel Recommends
Approval of Oral Fingolimod for Relapsing MS -- If agency
follows advice, it would become first oral disease-modifying
therapy for MS
A U.S. Food and Drug Administration advisory committee today
recommended that the agency approve marketing of fingolimod
capsules (formerly called Gilenia, Novartis International AG)
for the treatment of
relapsing multiple sclerosis. If approved, fingolimod would
be the first oral
disease-modifying therapy for the treatment of MS. While the
FDA is not required to follow the recommendations of its
advisory committees, it usually does. According to Novartis, the
agency is expected to make a final decision about whether to
approve the drug in September 2010.
During an all-day meeting held June 10, 2010, the FDA advisory
committee reviewed data about the effectiveness and safety of
fingolimod, as well as a proposed plan designed to monitor and
mitigate risks - called Risk Evaluation Mitigation Strategies (REMS)
that would likely be mandated to monitor safety if the agent is
approved. The committee also heard public testimony from
individuals and patient advocacy groups, including the National
MS Society, which testified to the unmet need for more therapies
for people with MS.
Among its discussions, the advisory committee recommended that
fingolimod be approved at the dose (0.5 mg once daily)
recommended by Novartis and that:
· Fingolimod demonstrated substantial evidence of effectiveness
for the treatment of relapsing MS to reduce the frequency of
clinical relapses and to delay the accumulation of physical
disability; |
May 21, 2010
MS Trial Alert: Study
Recruiting 8,000 People to Study JC Virus Levels in People Taking
Tysabri
Summary: Investigators nationwide are recruiting 8,000 people with
relapsing MS who are taking Tysabri® (natalizumab, Biogen Idec and
Elan Pharmaceuticals). The primary goal of this study is to better
understand whether the incidence of PML (progressive multifocal
leukoencephalopathy, a severe brain infection caused by JC virus) in
Tysabri-treated patients who do not have detectable antibodies to JC
virus (antibody negative) is lower than in patients who have
detectable antibodies to JC virus (antibody positive ). This is a
research question and it is not known whether detection of
antibodies to JCV in an individual can predict their risk of
developing PML. For this reason, the test result from this study
should not be used in treatment decisions. The study is sponsored by
Biogen Idec.
Please note: This is not a clinical study of an MS therapy, but
rather a research investigation related to MS.
. According to information
released by Biogen Idec, as of May 6, 2010 there have been 49
confirmed cases of PML among people who have used Tysabri after it
became available for prescription. At this point, there is no way to
determine the risk for developing PML in people taking Tysabri.
Scientists at Biogen Idec have developed a blood serum test that
would detect antibodies to the JC virus. The presence of antibodies
indicates that a person has at some point been infected by the
virus, which usually does not cause symptoms but lies dormant. In a
study of 13 patients who developed PML on natalizumab, all had serum
antibodies prior to the onset of PML. The team has tested 800 serum
samples and has found this test can distinguish between people with
MS who are negative for antibodies (about 40 to 50%) and those who
are positive (about 50 to 60%). (Abstract S31.003, American Academy
of Neurology Annual Meeting, 2010) The company is now conducting
further studies of the test in people starting or already taking
natalizumab therapy to determine whether it can reliably predict a
person's risk for developing PML, which may help doctors and
patients make more informed treatment choices.
The following information comes from Kathy Klein. This is serious. Our
nephew was bitten a few years ago. He was sitting on a porch step and
grabbed on to the step with his fingers on the under side of the
step….big mistake!
|
 |
|
It's
springtime & cleanup is going on. Be careful where you put your
hands. Brown Recluse spiders
like dark spaces & woodpiles.
Also areas in the attic.
|
|
This person was
bitten by a Brown Recluse spider; the following photos
illustrate the progression of a brown recluse spider bite. The
affected skin actually dies on his body! |
|
|
|
 |
 |
 |
 |
|
~Day 4 |
~Day 6 |
~Day 9-10 |
~Day 9-10 |
|
The Brown
Recluse Spider is the most dangerous spider that
we have in the USA |
|
Please be
careful. Spider bites are dangerous and can have permanent
and highly negative consequences. |
|
They like the darkness and tend to live in storage sheds or
attics or
other areas that might not be frequented by people or light. |
|
If you have a need to be in your attic, go up there and turn on
a
light and leave it on for about 30 minutes before you go
in to do your work! |
|
|
May 13th 2010
Cindy Berkovitz fell Tuesday a week ago and is currently in OHME
Rehabilitation facility which is the 3rd floor of LRMC North.
Surgery at The Villages hospital was successful. Hopefully next
Thursdays x-rays will confirm that. She has to stay off the leg for 2 to
3 months (ZERO pressure) and has a lot of healing both bone and
skin. Cindy is now settled in rehab. I went to a number of facilities
and discussed them with her. She was lucky to get into OHME Rehab Center
in Leesburg. Cindy will receive 3 hours of therapy Monday through Friday
and one hour on Saturday and Sunday. Her week day mornings are very busy
with therapy. If you plan to visit her I recommend after lunch between
1:00 and 7:30. She usually has 1/2 to 1 hour of therapy in the
afternoon. She gets her daily schedule every morning. Cindy has a direct
phone line. Info is as follows:
OHME Rehab Center
700 N. Palmetto Street
Leesburg, FL 34748
323-5762
I hope you saw the article about MSVP's donation of a ramp to the
Spanish Springs Bowling Alley. It was in Wednesdays. Local Section of
the paper.
______________________________________
VCC Members: If you use The Villages.Net email and you receive
the request for information shown below, please delete it.
If you received it & have responded, please contact the villages.net and
change your password ASAP!!!!!!
Per: Steve at The Villages.Net The following text in italics is the
bogus message.
"Dear subscribers.
This message is from the Thevillages Email Administrator IT Service to
all our email account subscribers.You are to provide to us the below
information to revalidate your account due to spam and to
Thevillagesgrade
the new 2010 spam version.
Notice:Your Thevillages Email account will be expired after a week, if
you
do not revalidate or Thevillagesdate your account. Please do co-operate
with us so we can serve you better, contact the adminstrator!!****
User Name:
Password:
Confirm Your Password:
Alternative Email :
Thank You.
Thevillages Email Administrator
Warning Code :ID67565434. "
June 1-11:30 Luncheon at Longhorn's Steak house on
Rt 27/441. RSVP to
kathysunset@embarqmail.com or 751-0207
June 8-9:30 Bowling at Spanish Springs Lanes. We go
to lunch after bowling. No reservations are needed.
June 15-10:00 meeting at La Hacienda Center.
Program TBA
June 22-10:30 Caregivers Meeting at La Hacienda
Center.
April 19th 2010
This is from Steve Berkovitz
I asked a friend Steve Ralph if he would take a few minutes of video and
put it on u tube. This is of the 2010 Lady Lake Walk MS at The Villages
Polo Fields.
Please forward this link to those you feel may want to see it.
Steve Berkovitz
http://www.youtube.com/watch?v=3zgrQProK5s
____________________________________________________________--
Dave and Ann Steiner are new members who joined us
today for lunch. Dave suggests Canadian TV has 5 excellent videos on
‘The Liberation Treatment for MS’ or what I call ‘CCSVI’.
www.ctv.ca. Also, Albany, NY is doing CCSVI studies. Contact
information is
wilcoxm@albanyvascular.com
________________________________________________-
May 4—11:30 Luncheon at crispers in Southern
Trace. RSVP to
kathysunset@embarqmail.com or 751-0207.
May 11—9:15 Bowling at Spanish Springs Lanes. We go
to lunch after bowling Reservations are not necessary.
May 18--!0:00 Meeting at La Hacienda Center.
May 25—10:30 Caregivers Meeting at La Hacienda
Center.
__________________________________
If we were to have a fundraiser selling the
hardbacks and paperbacks which we are no longer reading, who would be
able to donate to our book table? Please let me know if you would like
to move some books out of your house. Judy
__________________________________.
This message
was sent by Ann Stone, President of the Southeast
Massachusetts Club. Please forward to anyone you know living in The
Villages.
Hopefully, the police were advised as well. Ann Lives on
the South
Side of 466. Worth a warning.
Helen
Simmons,
Alhambra.
KEEP YOUR
DOORS LOCKED
We were at a
friends house yesterday in Duvall sitting
in their
living room......a guy walked into their lanai and tried to open the
sliding door
into their bedroom. He did not knock....just tried to open
the slider.
When he found it locked he immediately left. Our
friend went
out immediately and asked him what he was looking for....he said
"another
address".....to fertilize the lawn....????
Also, there
was a woman in Lynnhaven got out of the shower
and found a
lady in her house with a roll of paper towels. She asked her
what she was
doing in her house. She said she was going door to door
looking for
houses to clean and giving everyone a "free roll of paper
towels"....She told her to get out of her house immediately! This was
reported at
the Lynnhaven ladies luncheon and several others commented she had
been to
their door, but declined cleaning offer. There was a car out
front with a
guy in it......(The thought was they were also looking for things
"to
take")....
We get a
false sense of security living in The Villages.
Please pass
this on to everyone you know and please
KEEP YOUR DOORS
LOCKED! (Even
the garage door coming into the house if you have your
garage door
open.)
________________________________________--
This was sent to me by Alexis French
I work for an independent research company, Oxford
Outcomes, located in Bethesda, MD. Our contact at MS Foundation
suggested contacting your support group. Currently, we are recruiting
patients for a study evaluating patient preferences related to potential
efficacy and side effects associated with relapsing-remitting multiple
sclerosis (RRMS) treatments. Patients will complete one online survey
lasting 30 minutes and will be compensated ($50) for their time.
This study including the advertisement text has
been approved by the IRB and DOES NOT INVOLVE DRUGS OR ANY INVASIVE
PROCEDURES. We are only interested in patient opinions. All
information provided by patients will be will remain strictly
confidential and will not be shared with anyone other than the study
researchers from Oxford Outcomes.
Oxford Outcomes is conducting research to
understand patient preferences with respect to the potential
effectiveness and side effects of treatments for people with
relapsing-remitting MS (RR MS). They are seeking to recruit up to 400
people with RR MS who are residents of the United States, 18 years of
age or older, have adequate written and oral fluency in English, and are
willing and able to provide written informed consent
Eligible subjects will be directed to a secure web
server which will host preference and demographic questionnaires. The
questionnaires should take approximately 30-45 minutes to complete.
Subjects will be compensated upon completion of the questionnaires
online.
The preference survey will ask subjects to rate
desirability of various attributes of MS treatments, such as potential
side effects, effectiveness, and administration regimen, and to indicate
their preferences among hypothetical MS treatments. The clinical and
demographic questionnaire will ask patients about their MS treatment and
management experience as well as a set of demographic questions.
For more information or to participate, please
contact Alexis or Tina, toll-free, at 1-866-893-0282, or e-mail Alexis
at
alexis.french@oxfordoutcomes.com.
I would be happy to provide you additional
information or documentation related to the study if you would like to
see it. I can be reached at (240) 482-0034, ext 27. I look forward to
hearing from you. Thank you.
Sincerely,Alexis
French.Research
Associate
Oxford Outcomes | 7315 Wisconsin Ave., 250W | Bethesda, MD | USA | 20814
T: 240.482.0034/ Fx: 240.482.0043
| EMAIL
|
WEBSITE
|
MAP______
_________________________________________________________________
I have checked this through Snopes. Judy
A man came over and offered his services as a painter to a female
putting gas in her car and left his card. She said no, but accepted
his card out of kindness and got in the car. The man then got into a
car driven by another gentleman. As the lady left the service
station, she saw the men following her out of the station at the
same time. Almost immediately, she started to feel dizzy and could
not catch her breath. She tried to open the window and realized that
the odor was on her hand; the same hand which accepted the card from
the gentleman at the gas station.
She then noticed the men were immediately behind her and she
felt she needed to do something at that moment. She drove into the
first driveway and began to honk her horn repeatedly to ask for
help. The men drove away but the lady still felt pretty bad for
several minutes after she could finally catch her breath.
Apparently, there was a substance on the card that could have
seriously injured her.
This drug is called 'BURUNDANGA' and it is used by people
who wish to incapacitate a victim in order to steal from or take
advantage of them. This drug is four times dangerous than the date
rape drug and is transferable on simple cards. So take heed and make
sure you don't accept cards at any given time you are alone or from
someone on the streets. This applies to those making house calls and
slipping you a card when they offer their services.
I have also verified this.
While browsing on the web, a notice is given to press your F1 key
(that's across top left of your keyboard, and usually means "Help". Not
this time.
It will release a potent virus in your computer. . . if you don't press
F1, you will be reminded until you do. . .just click on the little 'x'
on the window, or close your browser totally - might even be better to
reboot.
Click on the SNOPES link below for further confirmation at of this
threat.
Do not press the F1 key no matter how many times your computer asks you
to.
http://www.snopes.com/computer/virus/f1key.asp
_________________________________
Vitamin D Council
Press Release
4/2/2010
Researchers at SUNY Upstate Medical University in Syracuse New York
recently announced that pelvic floor disorders in women are associated
with low vitamin D levels.
In a paper published in the April issue of
Obstetrics and Gynecology, Dr. Samuel Badalian and Paula
Rosenbaum studied 1,961 women and found 23% of American women over the
age of 20 have a pelvic floor disorder, which often leads to
urinary incontinence. Women who are overweight or who have had more than
one child are at an increased risk.
The researcher found that low vitamin D levels predicted pelvic floor
disorders, even in younger women and that urinary incontinence was twice
as likely in vitamin D deficient women compared to women with higher
vitamin D levels.
The authors concluded:
“Our findings suggest that treatment of vitamin D insufficiency and
deficiency in both premenopausal and postmenopausal women could improve
pelvic muscle strength, with a possible reduction in the prevalence of
pelvic floor disorders, including urinary incontinence.”
Press contact information: Dr. Samuel Badalian, MD, 104 Union Ave.,
Suite # 803, Syracuse, NY,
badalian@netzero.com
John Cannell, MD
Executive Director
The Vitamin D Council
1241 Johnson Ave., #134
San Luis Obispo, CA 93401
This is from Pat Chuck about cell phones
I have found a resource that may be helpful to your members & clients
who may qualify for this service so I’m sharing :o)
Please visit the website link to get details & share with others.
Thanks a bunch & have a wonderful Wednesday!!
www.safelinkwireless.com
Pat Chuck,
Program & Service Coordinator
National Multiple Sclerosis Society
Mid Florida Chapter
2701 Maitland Center Parkway
_________________________--
This was submitted by
Betty Gibson
Dr. Kantor has several
dozen blogs covering various MS problem including the one he presented
here in November. I encourage you to visit them. Judy
Virtual SecondLife.com MS Town Hall meeting with Dr. Kantor on Sun April
11, 2010 at 2 PM EST. .This will also be broadcast LIVE on Web TV --
www.neurologique.org<
http://www.neurologique.org/> or ustream.com/neurologique<
http://ustream.com/neurologique>
- Next week Dr. KJantor will be broadcasting
LIVE video blogs from the American Academy of Neurology (AAN) annual
meeting -- go to
www.youtube.com/neurologique<
http://www.youtube.com/neurologique>
- Past MS Town Hall meetings are recorded on
web TV -- go to
www.neurologique.org<
http://www.neurologique.org/> under the EDUCATION to see more.
RESEARCH:
Neurologique continues to open new research
trials that involve the entire community of neurologists and patients.
We are actively enrolling in 4 new clinical
trials:
(1) RECLAIM -- for MS exacerbations
(2) Using deep brain stimulation (DBS) for
MS and TBI tremor
(3) CMTT -- for chronic migraine prevention
(4) ADVANCE -- comparing monthly or every 2
week pegylated interferon to placebo in RRMS.
(5) NIH trial for Deep Brain Stimulation
(DBS) for MS tremor
We are also thrilled to be the latest and
only non-University site for
the UCSF MS Genetic Susceptibility Project
-- basically, everyone with
MS can undergo a blood draw, which will help
with the worldwide search
for the genetic basis of MS.
We are in various stages of getting approval
for many other research
studies -- including oral medications,
monthly medications, symptom
trials etc.
Stay tuned as the trials get approval and
start recruiting -- you can
visit
www.neurologique.org<
http://www.neurologique.org/> and go to the Research tab.
Please call (904)834-3007 for more details
on this and other research.
All research is FREE.
Recent Web additions:
- The MS Town Hall meeting in the Villages,
FL is now online under the Education circle at
www.neurologique.org<
http://www.neurologique.org/>
- A video about PPMS (primary progressive
MS) and What a neurologist is are now online under the Education circle
at
www.neurologique.org<
http://www.neurologique.org/>
- For the latest in neurology news, check
out the blogs and tweets (and Neurologique TV) at
www.neurologique.org<
http://www.neurologique.org/>
April 1st, 2010
This message
is from Steve Berkovitz.
"This is of the 2010 Lady Lake Walk MS at The Villages Polo Fields. I
asked a friend, Steve Ralph, if he would take a few minutes of video and
put it on u tube.
Please forward this link to those you feel may want to see it.
http://www.youtube.com/watch?v=3zgrQProK5s
This message is from John Simonetti.
I have spoken to our group about the
Congressionally Directed Medical Research fund and how in the past
couple of years we have been successful in securing millions of dollars
for MS Research and that recently, $2.4 million of it is funding the
stem cell research at the Cleveland Clinic.
It is now time for the 2011 Budget and our
efforts to secure even more funding for MS research. The Society is
urging all connected to the disease to write to their Congressional
representatives to urge them to fund MS research. The Society is
offering an easy way to do this online. Here is the web link:
http://capwiz.com/nmss/issues/alert/?alertid=14845801&queueid=%5Bcapwiz:queue_id%5D
April 6—at 11:15 luncheon at Gator’s
Dockside. RSVP to Kathy at
kathysunset@embarqmail.com or 751-0207
Saturday April 10th Seminar--
Route 46 Entertainment District, 4316 W. SR
46, Sanford, FL 32771, 10:30 Registration, 11:00 Program “Living
Well—How to Live a Healthy Lifestyle with MS” featuring Mark
Cascione, MD and Connie Easterling, ARNP. Lunch will be provided. RSVP
1-877-329-8327
April 13—at 9:15 Bowling at Spanish Springs
Lanes. We go to lunch after bowling. Reservations are not necessary
April 20—10:00 Meeting at La Hacienda Center.
Pat Chuck from The Society will speak on cognitive issues.
April 27—10:30 Caregivers Meeting at La
Hacienda Recreation Center.
February 23, 2010
We had 2 successful fundraisers this week. On
Thursday Mary Jo Vitale and Dave Worker played to a packed house at the
Church on the Square. Our sponsors were so impressed they are ready to
help again next year.
On Sunday 76 women played Mah jongg for
prizes. TooJay's catered and Elaine Johnson, a friend of Barb's, baked
36 dozen cookies for the event. It was another sucessful fundraiser.
RSVP a must: March 16th we will host a
seminar sponsored by TEVA Neuroscience. It will be held at La Hacienda
Center from 10:00-12:45. The seminar is open to all MS groups in the
area. TEVA will serve breakfast treats, but not lunch. Since space is
limited you must RSVP to Joe 751-1663 or
iamjoe640@aol.com. Space is limited. After a Walk update, Dr.
Gaudier will field questions, we will have a short break, then Jack
LLewellyn, Sports Psychologist and Motivational speaker will talk. For
those of you who have not heard Jack speak, you are in for a treat. He
is both inspirational and entertaining. Those who have heard him will
definitely be there to hear him again!
_____________________________
At our February meeting we met a new member
Vita Crain she has contact with and/or works at a medical closet
associated with St. John's and at Love, Inc.Vita knows of a family (Mom,
Dad and four boys) whose home burned down Thursday of last week and
everything is gone. Other organizations took things to them on Sunday
but they still need a microwave and a table and chairs where they can
eat. They may alsp need a bed, but I'm not sure.If you can help, please
let me know.
___________________________
Many of us were excited about the opportunity
to be part of a large international study on MS and were looking forward
to having Dr. Kantor's staff here to draw bloods. I received the
following email from Pat Chuck. It appears this will not happen the way
we had planned. Perhaps we can find another way.
It
has come to our attention that Dr. Daniel Kantor of Jacksonville has
been approaching Society self help groups to discuss a research project
he is involved with, and is also collecting blood samples from
volunteers at the conclusion of the program.
The
National MS Society North Florida Chapter is supportive of MS research
that is performed according to the strict and usual protocols of
academic research. However, it is in the opinion of the Clinical
Advisory Committee and chapter and national staff that Society self help
groups are not the appropriate venue for taking blood samples for
research due to safety concerns.
While he is welcome to discuss his research and offer interested
participants a way to get in touch with him, we have asked that Dr.
Kantor not take samples before, during, or after any Society sponsored
meetings.
___________________________________
Dee Burrows sent me the following:
http://www.ted.com/talks/aimee_mullins_the_opportunity_of_adversity.html
______________________________________________________________
This has been aroound for a long time, but it bears repeating.
|
Area
Code 809
|
Do Not DIAL
AREA CODE
809,284, AND876
THIS IS VERY IMPORTANT INFORMATION
PROVIDED TO US BY AT&T. DON'T EVER DIAL AREA
CODE
809
This one is being distributed all over the US ..
This is
pretty scary, especially given the way they try
to get
you to call.
Be sure you read this and pass it on.
They get you to call by telling you that it is
information about a family member who has been
ill or to tell you someone has been
arrested, died, or to let you know you have won
a wonderful prize, etc....In each case, you
are told to call the
809 number right away. Since there
are so many new area codes these days, people
unknowingly return these calls...
If you call from the U.S. , you will
apparently be
charged $242 per-minute.
Or, you'll get a long recorded message. The
point is, they will try
to keep you on the phone as long as possible to
increase
the charges.
WHY IT WORKS:
The 809 area
code is located in the Dominican Republic .
The charges afterward can become a real
nightmare. That's because you did actually make
the
call. If you complain, both your local phone
company and
your long distance carrier will not want to get
involved
and will most likely tell you that they are
simply
providing the billing for the foreign
company.... You'll
end up dealing with a foreign company that
argues they
have done nothing wrong....
Please forward this entire message to your
friends, family and colleagues to
help them become aware of this
scam.
AT&T VERIFIES IT'S TRUE :
http://www.att.com/gen/press-room?pid=6045
SNOPES VERIFIES IT'S TRUE:
http://www.snopescom/fraud/telephone/809.asp
|
____________________________________________- |
|
Healthy Recipes
Creamy Asparagus Pasta Recipe
Nutritional Info (Per serving):
Calories: 359, Saturated Fat: 4g, Sodium: 602mg, Dietary Fiber: 7g,
Total Fat: 10g, Carbs: 55g, Cholesterol: 18mg, Protein: 18g
Carb Choices: 3
Recipe Source:

Prep Time:
15 mins
Cook Time:
20 mins
Total Time:
35 mins
Ingredients
?
8 ounce(s) pasta, penne, whole-wheat
?
1 bunch(es) asparagus, trimmed and cut into 3/4-inch
pieces
?
1 1/2 cup(s) milk, whole
?
4 teaspoon mustard, whole-grain
?
4 teaspoon flour, all-purpose
?
1/2 teaspoon salt
?
1/2 teaspoon pepper, black ground
?
2 teaspoon oil, olive, extra virgin
?
3 tablespoon garlic, minced
?
2 teaspoon tarragon, fresh, minced, or 1/2 teaspoon dried
?
1 teaspoon lemon zest
?
2 teaspoon lemon juice
?
1/2 cup(s) cheese, grated Parmesan, divided
Preparation
1. Bring a large pot of water to a boil. Add pasta and
cook for 3 minutes less than the package directions. Add asparagus and
continue cooking until the pasta and asparagus are just tender, 3
minutes more. Drain and return to the pot.
2. Meanwhile, whisk milk, mustard, flour, salt and pepper in a medium
bowl. Heat oil in a medium saucepan over medium-high heat. Add garlic
and cook, stirring, until fragrant and lightly browned, 30 seconds to 1
minute.
3. Whisk in the milk mixture. Bring to a simmer,
stirring constantly, and cook until thickened, 1 to 2 minutes. Stir in
tarragon, lemon zest and juice.
4. Stir the sauce into the pasta-asparagus mixture. Cook
over medium-high heat, stirring, until the sauce is thick, creamy and
coats the pasta, 1 to 2 minutes. Stir in 1/4 cup Parmesan. Divide the
pasta among 4 bowls and top with the remaining 1/4 cup Parmesan.
February 12, 2010
Free entertainment: On Monday February 15th we have been
invited to see the Villages Theater Company’s performance of Neil
Simon’s “The Last of the Red Hot Mamas” at Mulberry Recreation Center.
The performance begins at 3:00 and there is no charge. This performance
is put on at no charge for those with a handicap and one carepartner. In
April they will present “The Trip to Bountiful.” Time and date to be
announced
Free items: Ruth and Bob Larmondra are moving to Virginia in April and
have the following items available to anyone who would like them:
bedside commode, walker and crutches. For more information, call Ruth at
347-6028.
Feb
16—Meeting. John Simonetti will tell us about the exciting research
happening around the world and update us on the new medications. Steve
Berkovitz and Barb Gaines will talk about upcoming fundraisers and the
Walk.
Feb
18--7:00pm Church on the Square. Concert by Mary Jo Vitale and Dave
Worker. Tickets are available through the Box Office or on line.
Feb
21—9:00-4:00 Mah jongg Tournament at Bridgeport Recreation Center. There
are still a few seats available.
Feb
23—10:30 La Hacienda Carepartners meeting.
Mar2—11:15 (note time change) Luncheon at Ay Jalisco! on Main Street
Spanish Springs. RSVP to
Kathysunset@embarqmail.com or 751-0207.
Mar
2—3:30-9:00 Vendor night at Lake Sumter Landing with the Wheel of Hope
Mar
9—9:15 Bowling at Spanish Springs Lanes. We go to lunch after bowling.
Reservations are not needed.
Mar
9-- Mar 2—3:30-9:00 Vendor night at Lake Sumter Landing with the Wheel
of Hope
Mar
16—MSVP will host a seminar sponsored by TEVA Neuroscience. It will be
open to those with MS from the surrounding area and breakfast treats
will be available. The speakers for the day include Dr. Gaudier who
will do a Q & A and Jack Llewellyn, Sports Psychologist and Motivational
Speaker who is both informative and entertaining. This one will be
excellent!
Mar
16--3:30-9:00 Vendor night at Lake Sumter Landing with the Wheel of Hope
Mar
23-10:30 at La Hacienda Center Carepartners meeting.
Mar23-- Mar 2—3:30-9:00
Vendor night at Lake Sumter Landing with the Wheel of Hope
January 4, 2010
Our own Connie Kay was
interviewed by CNN while she was at the Shepherd Center in Atlanta, a rehabilitation center
for those with spinal cord injuries. This segment featuring Connie was
aired at 9:00am December 26th and can be seen by typing
www.cnn.com then type 'shepherd center' and click on the magnifying glass. Then click on
the small picture at the center of the screen.
Tuesday January 5th at 11:30 we will have
lunch at Seafood Galley. RSVP by Sunday 1/3/10 to
kathysunset@embarqmail.com
or 751-0207.
If you will attend the seminar on Saturday at
Canal Recreation Center January 16th at 10:30, RSVP to
kathysunset@embarqmail.com
with your lunch order. This seminar and lunch is provided by Biogen Idec
makers of Avonex and Tysabri.
If you would like tickets to the Mary Jo
Vitale and Peter Worker concert on February 18th at 7:00 at The Church
on the Square, please contact Steve Berkovitz 751-0207 for tickes. We
have accessible seating and the best seats in the Church!
There is funding for 10 people who would like
to do therapeudic horeseback riding. First time participants will
receive preference for the grant money. The 10-week session will start
in February or March. You can print forms from their web site
mtraocala.org. The forms must be signed by your neurologist.
Our member Pat Provance, PT sent this to me.
Pat is a consultant to MSAA, NMSS and MSF
Staying One Step Ahead - PROGRAM TWO:
A
Four-Part Live Video Webcast Series on
Mobility and Multiple Sclerosis
Join MSAA online for this
free interactive live webcast where
MS fitness expert Brad Hamler
discusses and demonstrates safe and effective exercises which help fight
fatigue, build strength, decrease spasticity, and improve walking,
balance, and coordination. These stretches and strength training
exercises can be done by patients at any level of MS. Also, learn from
Brad, who is the author of
Exercises for Multiple Sclerosis, about the keys to sticking
to your exercise program and how to work with your body - not against
it.
Program Two: Exercise and Multiple Sclerosis
When:
Thursday, January 21, 2010
8 pm
- 9 pm EST (7 - 8 pm CST / 6 - 7 pm MST / 5 - 6 pm PST)
Presenter: Brad Hamler, MS fitness expert and author
Join us online - Register for the webcastThe
following webcast series is presented by the Multiple Sclerosis
Association of America and is made possible through the generous support
of Acorda Therapeutics and Eli Lilly and Company.
To register:
www.msaassociation.org
Go to the 3rd block down on the right.
Click on "Exercise......Register now"
________________________
There is exciting news regarding research in the quest for a cure for
MS. I have copied several articles which I feel give a good overview
of some studies which are underway including LDN for PPMS, CCSVI studies
in Italy and in Buffalo, New York. which are looking for volunteers, and
a summary of programs which NMSS supports.
______________________
(1) PILOT TRIAL NEWS - 1: Mult Scler. 2008 Sep;14(8):1076-83 A pilot
trial of low-dose naltrexone in primary progressive multiple sclerosis.
Dept. of Experimental Neurology (INSPE) and Department of Neurology, San
Raffaele Scientific Institute, Via Olgettina 58, Milan, Italy;
Fondazione Don Carlo Gnocchi, IRCCS, Milan, Italy. A sixth month phase
II multicenter-pilot trial with a low dose of the opiate antagonist
Naltrexone (LDN) has been carried out in 40 patients with primary
progressive multiple sclerosis (PPMS). The primary end points were
safety and tolerability. Secondary outcomes were efficacy on spasticity,
pain, fatigue, depression, and quality of life. Clinical and biochemical
evaluations were serially performed. Protein concentration of
beta-endorphins (BE) and mRNA levels and allelic variants of the mu-opiod
receptor gene (OPRM1) were analyzed. Five dropouts and two major adverse
events occurred. The remaining adverse events did not interfere with
daily living. Neurological disability progressed in only one patient. A
significant reduction of spasticity was measured at the end of the
trial. BE concentration increased during the trial, but no association
was found between OPRM1 variants and improvement of spasticity. Our data
clearly indicate that LDN is safe and well tolerated in patients with
PPMS. PMID: 18728058 PubMed - in process http://www.ncbi.nlm.nih.gov/pubmed/18728058
By: FRC Blog ? Multiple Sclerosis Treatment with Adult Stem Cells ?
Blogging | December 14, 2009 at 10:42 pm [...] Read more: FRC Blog ?
______________________________________
MS Patient Videos Found on the Adult Stem Cell Therapy website Take a
look at Preston Walker's Video, created in September 2009. Click this
link: http://adultstemcelltherapy.ning.com/video/preston-walker-1 See
Preston, before and after his stem cell treatment Hear of his symptoms,
including fatigue and depression Click the above link and take the time
to watch and listen
Tuesday, December 22, 2009 ImmunoSupressive vs Immunomodulator Therapies
for Multiple Sclerosis What are immunosuppressive drugs? Research
indicates that MS is an autoimmune disease. As immunosuppressants have
been proven to be beneficial in other autoimmune diseases such as
rheumatoid arthritis and psoriasis, drugs that have an immunosuppressant
function have shown to be potentially beneficial in controlling disease
progression in patients with MS. Immunosuppressive drugs work by
suppressing the body's immune reaction, and they prevent the body's
'good' white cells (leukocytes) from attacking each other. Normally,
leukocytes help regulate the immune system. Immunosuppressive drugs
offer another way of treating MS but they are normally used if the
disease is progressing in spite of immunomodulatory treatment. There are
a variety of immunosuppressive drugs that have been used in cancer
treatment and that have proved effective in treating advanced forms of
MS. Specific immunosuppressive drugs used in MS therapy include
azathioprine, mitoxantrone and occasionally cyclophosphamide or
methotrexate. However, only Tysabri? (Natalizumab) (in the USA) and
Novantrone? (Mitoxantrone) (in the USA, France and Switzerland) are
currently licensed specifically for use in the treatment of MS.
+++++++++++++++++++++++++++ What are immunomodulatory drugs?
Immunomodulatory drugs are Disease Modifying Drugs(DMDs), which alter
the course of the disease. Treatments for MS have been considerably
advanced by the availability of Disease Modifying Drugs. Positive
outcomes in people with relapsing forms of the disease have been
demonstrated, including: reduction in the frequency and severity of
relapses; and reduction of brain lesion development, as evidenced by
Magnetic Resonance Imaging, (MRI), and (for some DMDs) the possibility
of future disability. As the name suggests, immunomodulatory drugs
'modulate', i.e. change, the disordered immune processes of MS, and have
a corrective effect on the immune system. Interferons belong to this
group of drugs. Interferons are small soluble proteins or glycoproteins
that, as 'messenger substances', modulate immune responses. Read more
about Interferons and the role they play in treating MS. Recent results
from clinical studies indicate that therapy should begin as soon as
possible after diagnosis. Dosage and route of administration of current
available immunomodulatory drugs Proprietary name Rebif? Avonex?
Betaferon? Copaxone? International non-proprietary name Interferon
beta-1a Interferon beta-1a Interferon beta-1b Glatiramer Acetate
Delivery systems Ready to use Pre-filled syringe Reconstitution needed /
pre-filled syringe Reconstitution needed Ready to use pre-filled syringe
Available dosage 22 mcg three times a week or 44 mcg three times a week
30 mcg once a week 0,25 mg every other day 20 mg daily Route of
administration Subcutaneous injection Intramuscular injection
Subcutaneous injection Subcutaneous injection Other characteristics,
such as indications, format, etc. may vary from one country to another.
Always consult the product leaflet. SOURCE for the above data comes from
the MS-Network - However, their information has not been updated in a
couple of years. Such the case that Cytoxan and Imuran are also being
used for MS and are immunosupressants.
____________________
All Press Releases for December 22, 2009 Subscribe to this News Feed
National MS Society Continues to Propel Research Forward end MS -
Launches 2010 With Call for Research Grants to Pursue CCSVI 2009 saw
exciting research progress, unprecedented opportunities on the horizon,
and more scientists than ever working on resolving important questions.
Despite the year's economic and financial challenges, the National
Multiple Sclerosis Society continues to propel research forward to end
MS. New York, NY (Vocus/PRWEB ) December 22, 2009 -- 2009 saw exciting
research progress, unprecedented opportunities on the horizon, and more
scientists than ever working on resolving important questions. Despite
the year's economic and financial challenges, the National Multiple
Sclerosis Society continues to propel research forward to end MS. In
2009 the Society provided over $33.5 million to support 345 new and
ongoing projects in its research portfolio, plus $1.5 million for Fast
Forward, the Society's drug development subsidiary which continues to
attract new funding streams. In addition, thanks to the efforts of our
MS activists, $5 million was specifically allocated for funding MS
research out of the 2009 Department of Defense budget. As 2009 comes to
a close, the Society maintains its nimble pursuit of promising research
opportunities to end MS and has issued an international call for grant
applications to expeditiously examine the potential impact of the
chronic cerebrospinal venous insufficiency (CCSVI) hypothesis on disease
process in MS. Working with MS Societies around the world, an
international panel will be convened to conduct a joint expedited review
of the grant applications submitted in order to ensure a coordinated,
strategic approach to funding the best research examining the CCSVI
hypothesis in 2010.
http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206
The following is just a small sample of the many important, potentially
high-impact research results that occurred during 2009, which support
the Society's three research goals: stopping MS, reversing the damage
and restoring function, and ending MS forever. STOPPING MS Novartis
International AG announced that oral FTY720 (fingolimod) significantly
reduced relapse rates and slowed disability progression over two years
in a large-scale, phase 3 trial in relapsing-remitting MS. According to
the company, safety data confirmed a positive benefit-risk profile, and
the company plans to seek marketing approval at the end of calendar year
2009. An oral drug was submitted to the FDA for marketing approval in
September 2009. In a large- scale clinical trial, cladribine tablets
significantly reduced relapse rates and other disease activity in people
with relapsing-remitting MS. If the FDA application is successful, it
would be the first approved oral disease-modifying therapy for MS. Fast
Forward made its first investments in promising agents. This effort to
speed the delivery of new treatments to people with MS has already
attracted over $20 million in new funding. A small NIH-supported study
by Stanford University researchers found that women who breastfed their
babies exclusively (without giving supplemental bottles) for at least
the first two months post-partum were less likely to have an MS relapse
than those who did not breastfeed or who did not breastfeed exclusively
during the first two months. Multiple previous studies have documented
that smoking cigarettes increases the risk of developing MS. Harvard
researchers have now tracked hundreds of smokers, ex-smokers and
never-smokers, all of whom had MS, for an average of over three years.
They reported that disability progressed more quickly in smokers. Early,
small-scale trials are underway or getting started to test the potential
of a special type of adult stem cell found in the bone marrow, called
mesenchymal stem cells. Although these cells have the potential for both
turning down MS immune attacks and stimulating nervous system repair,
it's still too early to know whether this approach will prove safe and
beneficial. The first large-scale clinical ("phase II") trial of the sex
hormone estriol in MS, funded by the National MS Society and especially
its Southern California chapter, along with the NIH, continued to
recruit women with MS to participate, expanding the number of centers to
16 across the US. The two-year trial could lay the groundwork for a
larger, definitive trial that could lead to a new treatment option for
women with MS. REVERSING MS DAMAGE/RESTORING FUNCTION In response to
reports that a phenomenon called CCSVI (chronic cerebrospinal venous
insufficiency, a dysfunction of brain blood flow and/or blood drainage)
may contribute to nervous system damage in MS, the Society invited
investigators to apply for grant funding and created an accelerated
review process to explore this lead. If confirmed, this may open up new
research avenues into the underlying pathology of MS and new approaches
to therapy. The Society gathered together 70 members of the four
international Promise: 2010 Nervous System Repair Teams to share
progress and plan next steps to speed clinical trials of therapies to
protect and reverse neurological damage. Each team reported impressive
progress, with two of the teams about to launch new, small-scale
clinical trials of different types of stem cells, with separate funding.
(http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=758)
After showing benefits for temporarily improving walking speed in all
types of MS in two phase 3 clinical trials, an advisory committee for
the FDA recommended marketing approval for Acorda Therapeutics'
fampridine. If approved, this oral drug would be the first approved
specifically for managing MS symptoms. The National MS Society funded
early stage studies in the development of this drug. Two groups funded
by the Society reported findings on nerve tissue injury and repair that
add important information needed to stop MS progression and develop
nervous system repair strategies. Mayo researchers found two enzymes
that may serve as markers of progressive MS and nerve fiber injury, and
investigators at Mount Sinai School of Medicine (NY) reported that a
different enzyme is essential for replenishing myelin-making cells that
are depleted by MS. ENDING MS FOREVER The Society launched a genetics
study that should identify most of the common genes that contribute to
making people susceptible to developing MS. In the short run this should
set us up to discover new disease pathways that can be targeted for
therapy. In the longer run, this should provide a map for preventing MS.
Researchers at the University of Buffalo, New York and Italy reported
two studies that add to growing findings linking the Epstein-Barr virus
(EBV) with multiple sclerosis. One study suggested a link between EBV
exposure and the loss of nerve tissue, while the other explored
interactions between a person's genes and EBV. For the first time,
researchers in the UK and Canada found evidence of a direct interaction
between vitamin D and a common genetic variant, the presence of which
increases the risk of developing MS. The research highlights the
importance of studying the interaction of genes and the environment to
search for the underlying triggers of this complex disease. For details
on the studies mentioned visit: http://www.nationalmssociety.org/research/index.aspx
About Multiple Sclerosis Multiple sclerosis, an unpredictable, often
disabling disease of the central nervous system, interrupts the flow of
information within the brain, and between the brain and body. Symptoms
range from numbness and tingling to blindness and paralysis. The
progress, severity and specific symptoms of MS in any one person cannot
yet be predicted, but advances in research and treatment are moving us
closer to a world free of MS. Most people with MS are diagnosed between
the ages of 20 and 50, with at least two to three times more women than
men being diagnosed with the disease. MS affects more than 400,000
people in the U.S. and over 2.1 million worldwide. Each hour, someone is
newly diagnosed with MS. About the National Multiple Sclerosis Society
The National MS Society addresses the challenges of each person affected
by MS through funding cutting-edge research, driving change through
advocacy, facilitating professional education, collaborating with MS
organizations around the world, and providing programs and services
designed to help people with MS and their families move their lives
forward. The Society is dedicated to achieving a world free of MS. Join
the movement at www.nationalMSsociety.org. About Fast Forward, LLC Fast
Forward, LLC is a nonprofit organization established by the National
Multiple Sclerosis Society in order to accelerate the development of
treatments for MS. Fast Forward will accomplish its mission by
connecting university-based MS research with private-sector drug
development and by funding small biotechnology/pharmaceutical companies
to develop innovative new MS therapies and repurpose FDA-approved drugs
as new treatments for MS. For more information visit:
www.fastforward.org For Further Information and Interviews Contact:
Arney Rosenblat/212 476-0436
Arneyrosenblat@NMSS.org
__________________
Hope and Elation - Frustration and Anger - Fear and Loathing: The
Contrasting Emotional Responses to the Revolutionary Discoveries in MS
Made by Dr Za My thanks to Rusty Patterson for providing me with the
following article that you should all read. By Dr. Ashton Embry The
beautifully crafted, CTV documentary on the astounding findings of Dr
Zamboni and his team for multiple sclerosis has hit the MS community
like a tidal wave and has evoked a variety of emotional responses. Most
people with MS see CCSVI as a huge breakthrough for understanding and
treating MS and had an initial feeling of unbridled elation that finally
there was some real hope for an effective treatment on the horizon. I
expect most people with MS thought "I have to get my veins checked
out!", even before the credits rolled on the Zamboni documentary. Such a
reaction is completely understandable. Dr Zamboni's research leaves very
little doubt that most people with MS have impaired venous flow from the
brain and that such a problem is caused by narrowings and outright
blockages in the main veins which drain the brain. To anyone with a
semblance of objectivity, this is a "no drainer". I might note that
small studies in Poland and at both Stanford and the University of
Buffalo in the USA have already confirmed these findings. The University
of Buffalo is now doing a very large study to add further confirmation.
I would be willing to bet the farm that this study will validate Dr
Zamboni's findings and, most importantly, it will silence the vocal
skeptics, many of whom are neurologists with a blatant conflict of
interest regarding the emergence of a potentially effective, non-drug
treatment. I have noticed from discussions with numerous persons with MS
over the past few weeks that the initial feelings of excitement and hope
have been replaced in many cases by anger and frustration. This has come
about because everyone is finding it impossible to get an MRV to
determine if they indeed have venous blockages. In Calgary, one person I
was speaking with called every private imaging clinic and got no where.
The receptionist at each clinic simply read a prepared response they had
gotten from Alberta Health that there is not enough evidence to warrant
such a scan. I quote from a November 26 th email from the manager of one
clinic "Until we get further instruction . we don't feel that ethically
we can institute these scans for patients". Always nice to know the
Alberta government is out there making sure persons with MS do not find
out if they have a serious venous problem or not. I have spoken to a few
dozen persons with MS and each one expressed their burning desire to
find out if CCSVI affects them and if so, how badly. And each one was
very angry and frustrated that there was no way they could get such an
important test done. The fact that the government substantially
contributed to the problem only made them angrier. When it comes to fear
and loathing, I expect these feelings are being harboured by other
constituencies of the MS community, namely the MS clinicians,
researchers, drug companies and charities. Why would such pillars of
medicine fear and hate CCSVI? Regarding the clinicians, I have no doubt
that they quickly realized that, if relief of CCSVI is an effective
treatment, especially for the newly diagnosed, then they would
essentially be cut out of the action when it comes to treating MS
patients. Once a person was diagnosed with MS they would be immediately
be referred to a vascular specialist who would then oversee the person's
treatments. It would be "diagnose and adios" for the neurologists, a
somewhat ironic development given that is how the neurologists used to
treat MS patients before the advent of MS drugs in the mid-90s . As far
as the MS researchers go, I can definitely empathize with them. I have
been involved in research for over 40 years and I know, if someone
suddenly demonstrated that I had spent the last 40 years barking up the
wrong tree, I would have a variety of intense, negative feelings. One
thing that has never been mentioned is how the Zamboni results
demonstrate that the EAE animal model, which is widely used in MS
research and upon which 10s of millions of dollars are spent every year,
is clearly not suitable and is almost worthless. The mice do not develop
CCSVI and thus the EAE model is no better than an animal model in which
the mice developed CCSVI but no CNS lesions. A viable animal model for
MS needs to exhibit both phenomena - end of story. Such a realization
will cause great gnashing of teeth in the wide world of MS research. It
is also not a stretch to predict that fear and loathing in the MS
research community will turn to anger and I hope Dr Zamboni is prepared
for some blistering attacks on both his work and his character. Hell
hath no fury like a researcher proven wrong or disenfranchised. Finally,
I won't belabour the fears and anger of both the clinicians and the
researchers regarding the potential loss of all that drug company
largesse and research money which has been a bonanza over the past 15
years. That brings us to the drug companies that supply the drugs that
currently are used to treat MS or are in development. I have no doubt
these companies must be having hand-wringing meetings these days to
discuss the threat of a potentially effective, non-drug treatment for
MS. The boardrooms must reek of fear and loathing when the obvious
implications of the Zamboni discoveries are discussed. The bottom line
is that there are tens and possibly hundreds of billions of dollars at
stake in the foreseeable future and the drug companies are not going to
let that kind of serious cash simply disappear without a fight. It is
impossible to predict how the companies will deal with this real threat
to their bottom lines and stock prices but you know it is not going to
be pretty. Finall,y I suspect there is a lot of fear and loathing going
on at the national MS societies in the countries with high rates of MS
(e.g. Canada). For the MS Society of Canada this has been a public
relations disaster which potentially will translate into a loss of
revenue. The most obvious, embarrassing aspect of this fiasco is the
fact that MSSOC wasn't even aware of the Zamboni research until mid
October when they put up on their website a few, pathetic paragraphs on
CCSVI that were cribbed from NMSS. They had absolutely no plans to fund
any research on CCSVI until the CTV documentary put a gun to their head
and they then hastily cobbled together a press release (in which Dr
Zamboni's name was mis-spelt) and issued a call for CCSVI research
proposals. The big question is why, with their blue-ribbon scientific
advisory board, did MSSOC have no clue about CCSVI when papers on the
subject began appearing in 2006 and major contributions were publicly
available in late 2008 and early 2009. Were all their scientific
advisors asleep at the switch? Assuming these renowned researchers read
the scientific literature, do they have they the ability to recognize a
watershed contribution when it crosses their desk? The fact CCSVI went
unnoticed by MSSOC for more than a year is cause for serious concern
about the competency of the organization in terms of providing reliable
and timely scientific information to their members. What other important
information is currently out there going unnoticed by MSSOC and its
scientific advisors? To sum up, Dr Zamboni's amazing and groundbreaking
discoveries have induced a wide variety of emotions in the different
factions of the MS community. Such emotions are going to make it even
harder for his findings to be properly tested and, if proven to be
correct, to be incorporated into clinical practice. Regardless, it is
important to realize that such strong emotions exist and to be cognizant
of the different and somewhat antagonistic views and goals of the two
groups that comprise the MS family - those that live with MS and those
that live off MS. article can be found here Posted by Stuart at 9:04 AM
____________________________
Buffalo Neurological Imaging Center is doing testing on CCSVI and is
accepting applicants. If you are interested. Fill out the on-line
application. CTEVD/CCSVI STUDY Thank you for your interest in the
Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation
in MS and related Diseases study. Chronic cerebrospinal venous
insufficiency (CCSVI) is an ongoing problem when blood from the brain
has difficulty flowing properly to the heart due to blockages or
stenoses (narrowing of the veins). The main goal of the CTEVD study is
to investigate the prevalence (frequency) of CCSVI in patients with
multiple sclerosis (MS) when compared to healthy controls (HC) and
controls with other neurological disorders (OND). Another important aim
of the CTEVD study is to investigate the relationship between CCSVI and
clinical, magnetic resonance imaging (MRI) and environmental- genetic
outcomes in MS patients, HC, and controls with OND. We have received an
enormous response to recent media reports about our study. Due to the
number of applicants and limited funding we are providing you some
detailed information on our study and requesting some details about you
in order to assist us in evaluating your eligibility to participate.
Currently, enrollment will be closed until late January 2010 in order to
evaluate initial study results on first 500 enrolled subjects. If you
would like to be considered for this study or any future studies, please
follow the instructions below. 1) Applications will be processed
according to our study criteria and in the order they are received. 2)
Please only use the ctevd@bnac.net email address to communicate with our
study. 3) If you decide to write to the email address above, you will
receive a response with instructions to complete an online
questionnaire. 4) Once the team evaluates the information you provide in
the questionnaire, you will be contacted to inform you if you are
eligible for further screening. Please note this is a research
diagnostic study - there are no treatment interventions planned in this
study. The study procedures include doppler/ultrasound testing, blood
collection, a clinical examination and completion of an Environmental
Questionnaire. Interested participants can also have an MRI performed. A
subset of these individuals with also have an MRI of the neck veins. You
must: - Be an adult or child with confirmed MS - Adult MS must be
supported by fulfillment of the McDonald criteria - Pediatric MS must be
supported by fulfillment of Krupp and International criteria - Have a
disease course of Clinically Isolated Syndrome (CIS), Relapse-Remitting
(RR), Secondary-Progressive (SP), or Primary-Progressive (PP) supported
by the Lublin criteria - Have normal kidney functioning as supported by
lab work performed within 2 months of MRI testing (within 2 weeks if
other criteria are met) - Be able to communicate effectively - Pass
screening for MRI and contrast agent safety - Be able to travel to
Buffalo, NY to complete testing (we only have this site for testing) You
must not: - Be in active relapse or have steroid treatment in 30 days
prior to MRI - Have any vascular or heart problems - Have severe
cognitive impairment/dysfunction - Have a history of drug or alcohol
abuse, cerebrovascular disease or cerebral vascular malformations, head
injury or brain trauma - Have any vascular malformations (Bechet
Disease, Budd Chiari Syndrome, Congenital vascular malformations, Deep
Vein Thrombosis within the past year, Chronic Venous Insufficiency of
the lower limbs) - Be pregnant or expect to be pregnant during
participation If you are writing on behalf of a relative or friend,
please instruct him/her to contact us directly at this email address:
ctevd@bnac.net Please do not make any travel plans until your enrollment
is confirmed. All testing procedures are paid for by BNAC. However,
there is no financial compensation for your participation, or travel and
related expenses. No Doppler or MRV reports will be given to
participants or their physicians. Research MRI reports of the brain can
be made available upon request. If you think you are eligible to
participate and are willing to travel to Buffalo, NY for testing, please
take a moment to complete an online questionnaire which has been
designed to assist our team in determining your eligibility as well as
providing valuable clinical data for your research record. The
questionnaire can be accessed by going to: https://vovici.com/wsb.dll/s/8727g41a07
Due to the overwhelming response, it will take some time to contact you
for any next steps. But you can get the process started by completing
the online questionnaire. Thank you in advance for your patience.
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