From the Editor Disclaimer: The views and opinions expressed in this newsleer are those of the authors and not necessarily those of the Wellington Mulple Sclerosis Society. The Wellington Mulple Sclerosis Society accepts no responsibility for accuracy of informaon contained within this newsleer. Wellington Multiple Sclerosis Society Inc. Office Details Wgtn Ph (04) 388-8127 PO Box 15024 Kapiti Ph (04) 298-8887 Wellington 6243 Wairarapa Ph (06) 372-3414 Fax: (04) 976-1232 Email [email protected]Website www.mswellington.org.nz W elcome to the winter edition of the Wellington Multiple Sclerosis Society newsletter. This year’s Charity Spring Fling Ball is being held on the 23rd of August, at Mac’s Function Centre, Taranaki St and is shaping up to be a real ‘humdinger’! Tickets are still available see page 4 for details, we hope you can make it we’d love to see you there! You may have seen recent news stories on Wellington Hurricanes player Tim Bateman and his wife. Tim’s wife was recently diagnosed with MS but is unable to obtain drugs due to the archaic criteria of PHARMAC. A person needs to show a level of deterioration before PHARMAC will fund the disease modifying drugs. I believe this policy should be reversed, rather than waiting for someone with MS to deteriorate which has a major impact on quality of life, family relationships and pressure on the health system, wouldn’t it be better to provide treatment as soon as possible? Studies have shown the earliest one with MS can start taking the drugs the better chance the person has of staying in the workforce. Tim and his wife have decided to leave NZ for Japan where he will continue to play rugby and his wife will have full access to the medication immediately as well as newer more effective drugs not currently offered in NZ. Thankfully for Tim and his wife they have this option available to them and are taking it up. We will continue to lobby PHARMAC to improve the access to disease modifying drugs. Until next time, happy reading. [email protected]Hamish We are on facebook www.facebook.com/mswgtn and click on the ‘Like’ button, that way whenever we post something new to the page you’ll see it. PRINT JUST MAKES MORE SENSE WINTER 2014 EDITION Thanks To Our Supporters + Jack Jeffs Charitable Trust Contents From the Editor 1 Fieldworkers Report 2 News and Events 3 - 4 From the Treasurer 5 The Lightning Bolt 6 - 7 Wellbeing Information 7 Members Help Wanted 8 Research Information 9 - 10 General Information 11 - 12 Wellington MS Society Inc. President: Hamish Bockett- Smith Vice President: Carrie Philliskirk Secretary: Carrie Philliskirk Treasurer: William (Bill) Pitt Committee Rachel Pentecost Michael Stewart
Transcript
From the Editor
Disclaimer: The views and opinions expressed in this newsletter are those of the authors and not necessarily those of the Wellington Multiple Sclerosis Society. The Wellington Multiple Sclerosis Society accepts no responsibility for accuracy of information contained within this newsletter.
Wellington Multiple Sclerosis Society Inc. Office Details Wgtn Ph (04) 388-8127 PO Box 15024 Kapiti Ph (04) 298-8887 Wellington 6243 Wairarapa Ph (06) 372-3414 Fax: (04) 976-1232
W elcome to the winter edition of the Wellington Multiple Sclerosis Society newsletter.
This year’s Charity Spring Fling Ball is being held on the 23rd of August, at Mac’s Function Centre, Taranaki St and is shaping up to be a real ‘humdinger’! Tickets are still available see page 4 for details, we hope you can make it we’d love to see you there!
You may have seen recent news stories on Wellington Hurricanes player Tim Bateman and his wife. Tim’s wife was recently diagnosed with MS but is unable to obtain drugs due to the archaic criteria of PHARMAC. A person needs to show a level of deterioration before PHARMAC will fund the disease modifying drugs. I believe this policy should be reversed, rather than waiting for someone with MS to deteriorate which has a major impact on quality of life, family relationships and pressure on the health system, wouldn’t it be better to provide treatment as soon as possible?
Studies have shown the earliest one with MS can start taking the drugs the better chance the person has of staying in the workforce. Tim and his wife have decided to leave NZ for Japan where he will continue to play rugby and his wife will have full access to the medication immediately as well as newer more effective drugs not currently offered in NZ.
Thankfully for Tim and his wife they have this option available to them and are taking it up. We will continue to lobby PHARMAC to improve the access to disease modifying drugs.
HamishWe are on facebook www.facebook.com/mswgtn and click on the ‘Like’ button, that way whenever we post something new to the page you’ll see it.
PR INT JUST MAKES MORE SENSE
WINTER 2014 EDITION
Thanks To Our Supporters
+ Jack Jeffs Charitable Trust
Contents
From the Editor 1
Fieldworkers Report 2
News and Events 3 - 4 From the Treasurer 5
The Lightning Bolt 6 - 7
Wellbeing Information 7
Members Help Wanted 8
Research Information 9 - 10
General Information 11 - 12
Wellington MS Society Inc.
President: Hamish Bockett- Smith Vice President: Carrie Philliskirk Secretary: Carrie Philliskirk Treasurer: William (Bill) Pitt
Committee Rachel Pentecost Michael Stewart
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It’s hard to believe that we are half way through 2014 and winter is here!
Many of you would have heard that
Charlotte Hathaway has moved on to
another organisation. Charlotte was
a pleasure to work with and is missed by us all. Melanie
Smith took over as Wellington Field Worker in June and Sue
and I are enjoying working with her. Please remember that
we operate a client driven service which means we would
love to hear from you if you need some assistance. You can
contact Field Workers by phone, by email and at the regular
Support Groups.
I hope that the year so far has been kind to you and your
family and that you some have some easily achievable goals
in place for the future, whether it’s taking each day as it
comes or embarking on a tailored activity plan.
As we all know keeping active with MS is important and
Field Workers often get questions around what type of
activity and how much activity is useful. There is no simple
answer to this as it varies greatly from person, to person
dependant on their needs at the time. In saying that many
people with MS find water activity very beneficial such as
swimming or aqua jogging. Other useful activities include
tai chi and yoga. When looking to embark on, or review an
activity programme a tailored physio plan can be a great way
to start. The DHB’s have wonderful community Physio’s
who can visit you in your home and create a programme
specifically for your needs. You can access the physio
teams via a referral from your GP or Field Worker.
Community Centres are a great source of information
around different activities and exercise programme so if
you’re wanting more information try contacting your local
Community centre to see what they have available.
Wishing you all the best.
Greetings to you all. Nga mihi koutou.
I would like to introduce myself to Wellington MS. My name is Melanie Smith.
Hamish our President cheekily suggested I reference my cats in this introduction. As I don’t actually have a cat, I will use the analogy ‘if I was a cat’. So If I was a cat, I would definitely be a Moggie. I was born and raised in rural Waikato. I come from mixed heritage: Scottish, Irish, Walsh, Italian, English, and Maori. My iwi / tribal connections are to Northland, Nga Puhi, Ngati Manu (“The People of the birds”). So maybe I would be a cat that is not good at catching birds, out of respect for my tribe’s mythology.
At 17, I moved to the Wellington Region, where I studied and have lived for most of the next stage of my life. I am a registered Occupational Therapist with a varied work history across physical, mental health, and addiction fields. I am a mother of three. The oldest is living overseas. The younger two are of High School and Intermediate ages. I like to swim for relaxation, walk the dog, sew, and meet with friends and family.
It is an honour to be given the appointment as the new Field Worker, replacing Charlotte. I look forward to meeting members through the support groups and as required. Please feel you are able to make contact through the phone service as usual.
Introducing Melanie Smith our new Wellington Field Worker
Welcome Melanie to our team, it's great to have you with us! Regards Hamish
A note from your Fieldworkers…
Gillian, Sue and Melanie
from wellington’s Fieldworkers: By Gillian Fryf
Thanks!
Page 2 Wellington Multiple Sclerosis Society Inc. Winter 2014 Newsletter
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wellington ms societyNews and Events:
➚NEWS: Annual MS Wellington Street Appeal
Our 2014 Annual Street Appeal was on Friday the 14th of March. A big thank you to all those who generously gave up their time to help us to collect, it was very much appreciated!
Thanks!
NEWS: 2014 Memberships are now due
2014 membership subscriptions to the Wellington Multiple Sclerosis Society are now due. Subscriptions are from the 1st of January 2014 to the 31st of December 2014.
There has been a few changes to our membership fee structure since the last AGM. These are:
• Annual Membership now costs $50 per year
• 5 Year Membership costs $200
Please note: Life memberships are no longer available instead we have replaced these with a 5 year membership for the price of 4 years. All Life memberships paid before the 31st of December 2013 are still valid and will be honoured.
A membership subscription invoice of the 2014 year has been included with this newsletter. If you have already paid we thank you, please discard the invoice.
If you have previously joined as a life member we thank you also, perhaps you might like to send us a donation to assist us with our ever increasing costs.
Lastly, members annual membership fees are very important to our society as it helps to ensure we continue to offer services to people with MS in the greater Wellington area.
EVENT: MS Wellington Spring Fling Ball 23rd of August 7.30pm Mac's Function Centre, 4 Taranaki Street
Our Wellington Multiple Sclerosis Society Ball has become a sensational annual event. This year we are hosting a Spring Fling ball which is taking place on Saturday 23rd August. Join us in saying goodbye to winter and welcome in the spring season in style at the Mac’s Function Centre on Taranaki St.
We are very fortunate to have fabulous fashion stylist Trudi Bennett from Wardrobe Flair and Wellingtons The Breeze Stu Smith compering the evening for us.
All money raised from tickets sales and prize donations is going to the Wellington Multiple Sclerosis Society to ensure we can continue offering services and support to people with Multiple Sclerosis and their families in the Wellington region.
A great night out for a great cause, why not get a group of friends together and make a night of it, everyone welcome!
Event Details: 23rd of August 7.30pm to late Mac's Function Centre, 4 Taranaki Street, Wellington Ticket Price $70 per person
To purchase tickets and for information go to www.mswellington.org.nz/ball
Tickets can also be purchased by calling 04 974-5530
Many thanks to HELL Pizza our Platinum Sponsor for the event, their support is greatly appreciated!
Wellington Multiple Sclerosis Society Inc. Winter 2014 Newsletter Page 3
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wellington ms societyFrom the Treasurer:
Greetings to you all. I hope you are coping well with the change in temperature and weather patterns. From my
experience, this is often a time of discomfort to people with MS.
As Treasurer for this region, I see one of my responsibilities as keeping the membership up-to-date with our financial position. I have written before about my concerns over funding. I am not sure if anyone reads what I say because I get no feedback except from my colleagues on the Committee, although this will not stop me from trying.
I see my principal responsibility as taking a strategic approach to the management of the Society’s funds. In other words not just focusing on meeting today’s bills and commitments but also trying to ensure we can meet our commitments over the rest of this year and in subsequent years. Cash flow is a critical part of this and can be best achieved by ensuring success with funding/grant applications, donations and collections. So you can appreciate my concern when a particular funding activity has a poor outcome.
The annual Collection Day, held this year on 14 March, was very disappointing. This provides a significant portion of our annual funding. In both 2012 and 2013 we collected $23,000, this year we only managed to collect $14,000. Expenditure for the day was approx $4,000, so our net take was $10,000. The most upsetting aspect of this result was the lack of collectors, particularly members of the Society. It could have been so much better.
Following on feedback from previous collections, we took a fresh regional approach for this collection, rebranded ourselves to reflect the Society’s colours, had new vests, collection boxes and donation cards designed and printed. This is where the expenses for the day were incurred. We targeted suburban railway stations, shopping centres and supermarkets. We ended up with more collection points than ever before. All the liaison work was done and the necessary approvals in place.
Our first concerns arose in the weeks before the collection day. We tried, endlessly it seemed, to get support from our membership to help with collecting. Only 25 of our members responded, approx 5% of the membership. I cannot thank these 25 members enough, some were in wheelchairs and
a number supported by care givers, but they all seemed to have a good time. As usual, the balance of the collectors were committee members - past and present, friends of these people, and some local volunteer support groups.
Prior to collection day, we had to make the decision to cancel a number of collection points despite the work undertaken to get approvals. Even worse, was that on the day, we simply had to close down what had been very rewarding collection points through the lack of collectors. We can, and must, do better. We need your support and help for future fundraising.
It is important to remember that all our expenditure is funnelled back to the membership. The Committee are volunteers and we operate out of our own homes to ensure there are few overheads. Our commitments are three Field Workers who work a total of 80 hours a week, and a funding administrator who works twelve hours a week. With salaries, training, transport and communications support, this equates to approximately $120,000 per annum.
We are not the only organisation with funding issues. Every other organisation I have spoken with in the charities sector has the same problems. There are more organisations applying for funding but the available money has not increased. Our funding administrator is doing a great job but the prospects are limited. It is, therefore, important that fundraising activities such as our MS collection day and annual ball, which we can significantly influence, are supported to the hilt by the membership.
The committee will continue to review expenditure and look harder at where we invest our limited funds to get the most/best benefit(s) for members.
William (Bill) Pitt
Treasurer
Wellington Multiple Sclerosis Society Inc. Winter 2014 Newsletter Page 5
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Two years ago I experienced some strange health problems which ultimately led to a diagnosis of
Multiple Sclerosis. I went through all the normal stages of shock and grief. The big questions, like “what does this mean for me” and “how long will I be able bodied” overwhelmed me for a while and then I began looking for solutions for this “incurable” disease.
At first I tried the radical dietary and lifestyle restrictions that many have had success with. This included having an extremely low saturated fat diet with no red meat or dairy products. So I added this to the list of things I didn’t eat as I had been gluten free and diary free for some years already.
Last September a colleague (who I now consider to be a friend) said she had a leaflet she would like to give me about a three day course her daughter had been on. This course had changed her daughter’s life and she felt it could change mine too. I was extremely sceptical but decided to have a look anyway.
The leaflet was interesting enough to get me to look at the website and the website was exciting enough for me to spend several hours reading through the content and testimonials.
When my partner came home from work I was feeling very emotional and excited- this could be the answer. I told him about the course and he instantly agreed that we should spend the money and do whatever it would take for me to be well again. I am so thankful for the colleague that told me about the programme that now I want to tell anyone who will listen about it too. It could change your life or the life of someone you know too.
MS causes different problems for different people but the main symptom I had been suffering with was fatigue. This fatigue made it very difficult to function the way I wanted to but I had managed to find ways of coping. This included scheduling three rests into my day at around 10am, 12.30pm and 3.30pm. These required me to have a lie down and some quiet time for 10 – 20 minutes.
I also had to really think about what I could realistically achieve in a day. I generally had to have a sit down for
10 minutes after getting the washing in or doing any other physical task.
Socialising became difficult. I was really too tired to go out in the evenings and driving any distance further than work had become a bit of a problem so that I eventually stopped doing it. Last year I couldn’t manage or face the effort required for a proper holiday away so I only had a short, four day break to Picton and that was a challenge.
What’s my life like now, just a matter of weeks after completing this course? My life is amazing. It’s better than it used to be before MS because now I appreciate everything I do. I eat whatever I want, ice cream, fish and chips you name it. My first real beer was memorable after seven years of reacting to gluten.
But I didn’t do this training course so that I could eat anything, I did it for MS and my MS fatigue.
Well that is all a thing of the past too. I now do what I want, when I want. Teaching has become so much easier and more enjoyable and it is the start of the school year which is always challenging.
I have been out and about doing things every weekend like long visits to the Zoo, Zealandia Wildlife Park, Te Papa, fairs,
lunching and socialising with family and friends. I’ve stayed out for hours and hours at a time with no concerns of a need to rest or slow down or concerns about what I would eat.
I find it hard to sit still and relax. I have nearly worn the soles off my feet with all the power walking I have been doing and unbelievably three weeks after finishing the course, and after a full (and full on) week at work I could be seen power walking uphill for the longest uphill powerwalk I have ever done. I have just booked a holiday for a week in Queenstown next school holidays and another for a week in Rarotonga In the September holidays.
This amazing training programme that has changed my life (and the lives of so many others) is called the “Lightning Process”.
The Lightning Bolt That Changed My LifeBy Stella Bensemann
continued on next page
Page 6 Wellington Multiple Sclerosis Society Inc. Winter 2014 Newsletter
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Continued from previous page
We are so fortunate in NZ to have the amazing Mel Abbott offering this course. She herself had ME for 11 years prior to doing the course and now she is the most energetic person I have ever met. Please check out her website and read some of the amazing testimonials from people like myself who have learnt to cure themselves of many conditions.
2014 will probably be the best year of my life. I am well, I feel amazing and I totally appreciate it.
Bring it on!
Article from http://www.workswonders.co.nz
For more information about the “Lightning Process” go to http://www.empowertherapies.co.nz/
Special offer for members of MS Wellington
Hardy’s Health are pleased to offer our members at 10% discount on in store products as well as a free 30 minute Wellness consultation with Daisy. This offer is available in Wellington, Lambton Square and Coastlands Paraparaumu.
Hardy’s give great advice and stock a very good quality range of natural health products. Daisy has a number of year experience in natural health, is currently studying naturopathy, and has had great feedback from MS members who have had the wellness consultation.
wellbeingInformation: g
WELLBEING: Massage therapy can alleviate symptoms of multiple sclerosis
An estimated 2.3 million people worldwide live with multiple sclerosis (MS) each day, a debilitating disease that can often cause severe pain, muscle spasms, poor circulation, anxiety, stress and clinical depression. Although not a substitute for regular MS treatment, massage therapy is an effective, complementary and alternative medicine (CAM) that can alleviate such symptoms and in turn, help to pacify the disease.
MS develops as a result of interference between the brain, spinal cord and other areas of the body. Symptoms and treatment vary widely depending on the amount of nerves that are affected. Massage therapy is an easy and affordable complement to doctor-prescribed treatments. Massage therapy may assist MS patients in managing the stress of their symptoms and to improve their quality of life.
A study reported in the Multiple Sclerosis Journal indicated lower pain levels of up to 50 percent across three months by those participants who received 10 weeks of massage therapy. Long known for its stress-busting abilities, massage has a powerful effect on health and overall well-being. And because stress may trigger or worsen MS symptoms, it is important for sufferers to find ways to relax.
"Massage therapy is a well-being approach for addressing body, mind and spirit. Along with stress reduction, massage therapy can help to increase flexibility and reduce muscle stiffness caused by spasticity," states Erin Kersanty, Regional Therapist Coordinator for Massage Envy Spas in the Greater Cleveland-Akron-Canton region. "Massage therapy is also very effective at increasing deep sleep, as touch itself has been known to create positive feelings such as comfort and care. And with more deep sleep, you have less pain," added Tiffany Field, Ph.D., of the University of Miami's Touch Research Institute.
Source: News Medical.Net (28/07/14)
Wellington Multiple Sclerosis Society Inc. Winter 2014 Newsletter Page 7
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members' Help Wanted:
The group has been established to advocate for the public funding
of MS drugs and has put together a project plan for the period up
to September.
Neil Woodhams, President of MS Auckland, is leading the group
with assistance of interested participants, now listed as 24 as at 20
May, who seek to have these treatments publicly funded.
Two weeks ago PHARMAC released the minutes of the
February 2014 meeting of its Pharmaceutical Technical Advisory
Committee recommending both Tysabri (Natalizumab) and Gilenya
(Fingolimod), oral treatments, as the preferred primary and first line
It has taken PTAC more than three years to agree to this decision,
and despite the endorsement of these new MS drugs as the
preferred first line treatment, it continue to require patients to try
and typically fail a course of treatment that it no longer endorses
PHARMAC as providing the best opportunity for MS patients.
PHARMAC has not yet to agreed to fund its own preferred first
line treatments. To date there are only 13 privately funded patients
receiving the treatment of Tysabri, including four who continue to
receive the medication from a manufacturer’s trial.
Since PHARMAC took over the MS drug funding in June 2013 it
has refused all NPPA (Named Patient Pharmaceutical Assessment)
funding applications submitted by MS patients’ neurologists.
PHARMAC continues to refuse to provide or commit to a date
to provide funding for its preferred first line treatments. The MS
community are extremely concerned that the PHARMAC funded
treatments (which are now not recommended as being as effective)
actually increase risks and diminish the efficacy of the new MS
drugs. It has been advised and well known through global research
that these oral medications provide the best chance of success
in limiting or preventing disability when given early, unlike current
treatments which are only allowed to be prescribed when a level of
disability is visible.
It is not acceptable to the MS community that PHARMAC fails
to make time sensitive decisions and avoids making a public
commitment to decision-making time frames.
New Zealand has significantly lagged
behind all other Western nations in the
funding of Tysabri (Natalizumab) and
Gilenya (Fingolimod) treatments.
Australia approved Tysabri funding in
April 2008 with around 2000 patients currently receiving Tysabri
treatment alone.
MS patients in New Zealand want and deserve an adequate
standard of publicly funded treatment and more transparency
from PHARMAC on how it determines and budgets for its funding
priorities for MS medications and treatments.
The MS community needs to hold both PHARMAC and our elected
politicians to whom it reports to account. We seek your assistance
to secure access to what is widely acknowledged as the best
first line treatments for MS patients and to make the treatments
available to all who would benefit from it. We are seeking a cross-
party funding commitment from all major political parties prior to
the general election.
In the first instance, please contact your Field Worker or the office
to receive a full information pack so that you, your family and
friends can be advised on the best process to get our Government
to listen.
Yours sincerely
Neil Woodhams
MSNZ Executive Committee Member
Malcolm Rickerby
MSNZ President
Welcome to the Patients Steering Group for MS Drugs
Page 8 Wellington Multiple Sclerosis Society Inc. Winter 2014 Newsletter
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research Information:
New Australian research shows that adverse levels of ‘bad’ fats in the blood are closely linked to the level of disability in people with MS and the rate of disability progression.
This important finding suggests that simple lifestyle modifications, such as diet and exercise, may slow the rate of disability progression in MS because these changes will help to reduce the levels of ‘bad’ fats that are circulating in the body.
The researchers, led by Dr Ingrid van der Mei at the Menzies Research Institute Tasmania, have published their findings in two papers published in the Multiple Sclerosis Journal and the Journal of the Neurological Sciences.
Dr van der Mei received an MS Research Australia project grant in 2012 to investigate whether fats play a role in the risk of relapses in MS and disability progression.
Fats are an essential component of the brain and contribute to its repair and maintenance. There is now international evidence suggesting that some fats, such as particular types of cholesterol and triglycerides, usually associated with poor cardiovascular health, are associated with the onset and progression of MS.
In the current project, PhD student Mr Prudence Tettey, working with Dr van der Mei, has examined the fat profiles of 141 people with relapsing remitting MS, in blood samples that were collected every six months over a two and a half year period. This work is part of the National Health and Medical Research Council-funded Tasmanian MS Longitudinal Study. This study is a highly valuable long-term data resource with detailed information on relapses, disability, MRI scans, lifestyle, immune function, virology and genetics.
They found that the amounts of a number of different fats in the blood, including the high and low density lipoproteins (HDL and LDL), and triglycerides, were closely associated with disability level as measured by the Expanded Disability Status Score (EDSS). This association remained strong even when other potentially confounding factors such as smoking, exercise, age and sex were taken into account.
The yearly change in the disability level of each patient was also assessed in relation to fat levels over the period of the study. This indicated that a higher rate of disability
RESEARCH: Fat levels in blood influence disability progression in MS
Source: Multiple Sclerosis Research Australia (27/10/2013)
continued on next page
progression was also associated with higher levels of total cholesterol (TC) relative to HDL levels (that is a higher TC/HDL ratio).
However, fat levels did not have any influence on the risk of experiencing a relapse for the people in the study and body mass index (a measure calculated from weight and height to determine obesity levels) was also not related to relapses.
This suggests that rather than influencing the inflammatory processes that underlie relapses in MS, the profile of fats in the blood may instead influence the ongoing degeneration of brain tissue that drives the progressive phase of the disease.
The researchers looked at the levels of physical activity and used time-lag modelling of the data, but could find no evidence for ‘reverse causality’ i.e. that a faster progression in disability leads to a higher body mass index (BMI) and higher fat levels in the blood.
The authors suggest that reducing fat levels in the blood, decreasing BMI into the healthy range, and increasing physical activity may significantly reduce the accumulation of disability for people with MS. They recommend that clinical studies are required to confirm the benefits of these types of interventions for slowing disability progression over time.
RESEARCH: New findings could help explain why MS affects more women than men
Published date: 09 May 2014
Research published has uncovered differences in the brains of men and women which may help to explain why around three times as many women than men develop MS.
A promising early study from the Washington University School of Medicine suggests that a protein called S1PR2 could play a role in allowing immune cells to enter the central nervous system and cause the damage that occurs in MS.
Researchers have found that the S1PR2 gene appears to be more active in women than in men, and also in regions of the brain that tend to be affected by MS.
Dr Emma Gray, Research Communications Manager at the MS Society (UK), said: "We don't yet fully understand why MS affects more women than men, and it's an area that's intrigued scientists, and people
Wellington Multiple Sclerosis Society Inc. Winter 2014 Newsletter Page 9
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research Information: continued
continued from previous page
There appears to be no link between chronic cerebrospinal venous insufficiency and multiple sclerosis (MS), according to new research published in CMAJ (Canadian Medical Association Journal).
In 2009, Dr. Paolo Zamboni postulated that chronic cerebrospinal venous insufficiency is a cause of MS, an inflammatory disease of the central nervous system that affects people in northern climates in particular. Published evidence has not been able to find a link to MS, and no one has been able replicate his findings. Several recent studies have shown an association between ultrasound-diagnosed chronic cerebrospinal venous insufficiency and MS but results vary widely.
Using ultrasound technology and magnetic resonance venography, researchers undertook a study to explore the validity of the theory that chronic cerebrospinal venous insufficiency and MS are linked. They enrolled 120 patients with MS and 60 healthy controls. A high percentage of patients (58%) and controls (63%) met one or more proposed ultrasound criteria that would help diagnose chronic cerebrospinal venous insufficiency although there were no differences seen between groups.
"We detected no link between chronic cerebrospinal venous insufficiency and multiple sclerosis," writes Dr. Fiona Costello, departments of Clinical Neurosciences and Surgery, University of Calgary, Calgary, Alberta, with coauthors.
They cite concerns over the diagnosis of chronic cerebrospinal venous insufficiency.
"We also identified several methodologic concerns that challenge the validity of the criteria used to define chronic cerebrospinal venous insufficiency, and in turn we dispute the authenticity of this diagnosis."
continued on next page
with MS, for many years. A number of theories have been suggested in the past, including the influence of hormones or possible genetic factors - and this study explores one such genetic factor in further detail, which is really interesting."
The research was published in the Journal of Clinical Investigation and was led by Professor Robyn Klein.
RESEARCH: No apparent link between chronic cerebrospinal venous insufficiency (CCSVI) and MS
Scientists at The New York Stem Cell Foundation (NYSCF) Research Institute are one step closer to creating a viable cell replacement therapy for multiple sclerosis from a patient's own cells.
For the first time, NYSCF scientists generated induced pluripotent stem (iPS) cells lines from skin samples of patients with primary progressive multiple sclerosis and further, they developed an accelerated protocol to induce these stem cells into becoming oligodendrocytes, the myelin-forming cells of the central nervous system implicated in multiple sclerosis and many other diseases.
Existing protocols for producing oligodendrocytes had taken almost half a year to produce, limiting the ability of researchers to conduct their research. This study has cut that time approximately in half, making the ability to utilize these cells in research much more feasible.
Stem cell lines and oligodendrocytes allow researchers to "turn back the clock" and observe how multiple sclerosis develops and progresses, potentially revealing the onset of the disease at a cellular level long before any symptoms are displayed. The improved protocol for deriving oligodendrocyte cells will also provide a platform for disease modeling, drug screening, and for replacing the damaged cells in the brain with healthy cells generated using this method.
"We are so close to finding new treatments and even cures for MS. The enhanced ability to derive the cells implicated in the disease will undoubtedly accelerate research for MS and many other diseases," said Susan L. Solomon, NYSCF Chief Executive Officer.
"We believe that this protocol will help the MS field and the larger scientific community to better understand human oligodendrocyte biology and the process of myelination. This is the first step towards very exciting studies: the ability
RESEARCH: A step closer to cell therapy for multiple sclerosis
Page 10 Wellington Multiple Sclerosis Society Inc. Winter 2014 Newsletter
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from previous page
generalinformation:
IS MS HEREDITARY OR NOT?
The answer is “No, it’s not inherited” but it isn’t quite that simple. This is the way the science goes.
Inherited Conditions
To count as an inherited condition, MS would have to be passed on in a predictable way which it isn’t.
Inherited conditions are caused by faulty genes which are passed on from one generation to another. Typically, a child has either a one in two or a one in four chance of inheriting the condition from their parents. Examples of conditions inherited in a predictable way are haemophilia and muscular dystrophy.
In inherited conditions, identical twins will either both have the condition or both be free of it because they carry identical genes. This doesn’t happen in MS. If one identical twin has MS, the other twin only has about a one in four chance of having MS, again showing that MS is not a truly inherited condition.
Also, most people with MS have no history of MS in the family so it seems to have appeared from nowhere.
The role of genes in MS
Genes do play a part in MS. Some genes make it more likely that someone gets MS but having those genes is definitely not enough on its own. Other factors are needed to trigger MS in someone who carries genes that make them more susceptible to getting MS.
Recent research has found over 100 genes that contribute to susceptibility to MS. Each gene represents a tiny part of the risk so the more of these different genes that someone carries, the more their risk is increased. Consequently, there isn’t a simple genetic test to say whether someone is susceptible or not.
Other factors that play a part
So, what factors can trigger MS in someone who has got the genes that make them more susceptible? A whole range of factors have been investigated and the evidence for which factors might be triggers is patchy. The strongest contenders are:
The bottom line is that MS is not inherited but there is an increased risk in families who already have a member with MS because they carry some of the same genes. However, other factors are needed to trigger the condition and, overall, MS is still considered as a relatively rare condition compared with, for example, diabetes or breast cancer.
The risk of MS in a family member depends on how closely related they are. The more closely related, the more likely that both will have MS. In a recent study of over 42,000 people in Sweden who had a parent with MS, only 515 (1.2%) had also been diagnosed with the condition. This translates into roughly a one in eighty chance of a parent and their child both having MS. This compares with a roughly one in 400 chance in completely unrelated people.
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to generate human oligodendrocytes in large amounts will serve as an unprecedented tool for developing remyelinating strategies and the study of patient-specific cells may shed light on intrinsic pathogenic mechanisms that lead to progressive MS". said Dr. Valentina Fossati, NYSCF - Helmsley Investigator and senior author on the paper.
In multiple sclerosis, the protective covering of axons, called myelin, becomes damaged and lost. In this study, the scientists not only improved the protocol for making the myelin-forming cells but they showed that the oligodendrocytes derived from the skin of primary progressive patients are functional, and therefore able to form their own myelin when put into a mouse model. This is an initial step towards developing future autologous cell transplantation therapies in multiple sclerosis patients
This important advance opens up critical new avenues of research to study multiple sclerosis and other diseases. Oligodendrocytes are implicated in many different disorders, therefore this research not only moves multiple sclerosis research forward, it allows NYSCF and other scientists the ability to study all demyelinating and central nervous system disorders.
Wellington Multiple Sclerosis Society Inc. Winter 2014 Newsletter Page 11
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TRUSTEE REQUIRED
The Dorothy Hamilton Memorial Trust is, to my mind, the “unsung hero” of our Society. It works quietly and efficiently in the background to the benefit of the Society and its members.
The Trust was set up approximately twenty years ago with a bequest from the estate of Dorothy Hamilton. This has since been added to. Its main purpose is to “support the work and activities of the Wellington Multiple Sclerosis Society”. The Trust does not fund the society on a regular or annual basis as this would ultimately exhaust funds. Its principal activity is to manage the funds available and achieve the best return possible. This enables the Trust to assist the Society should we have cash flow problems or special needs.
There are four trustees and a Secretary/Treasurer. One trustee is one of our Field Worker’s who represents the Society’s interest. There is currently a vacancy for a trustee. These are all voluntary positions.
I am told that the work of a trustee is not onerous but it is important. There is usually one meeting a year in Wellington and two conference calls during the rest of the year. Background reading for the meeting and conference calls is required. The day-to-day management of the investment portfolio is carried out by an Authorised Financial Advisor appointed by the Trust.
The Committee has decided to ask our membership for volunteers for this position. The main requirements for the position are an understanding of the Society’s work and an investment background.
Returning to the original question: MS is not inherited in the true sense of the word and this is what many neurologists tell people with MS. However, there is an increased risk in families so it is not surprising to sometimes hear of two members of the same family both having MS.
We are pleased to announce that Rydges Hotels & Resorts New Zealand have established an accommodation commission partnership with the Wellington Multiple Sclerosis Society.
The Rydges Hotels New Zealand includes Rydges Auckland, Rydges Wellington, Rydges Rotorua, Rydges Latimer Christchurch and Rydges Lakeland Queenstown Resort.
Booking your accommodation at any one of Rydges Hotels will not only gives you access to the best available rates but also earns Wellington MS a 10% commission.
This offer is open to anyone who wishes to stay at a Rydges Hotel. Please feel free to let friends and family know about this deal as it is another great way of support Wellington MS.
To take up this offer bookings must be made via www.rydges.co.nz using the Corporate ID: MLPWEB
Note: Room rates are dynamic and will fluctuate with availability.
NEWS: Wellington MS Rydges Hotels Partnership
Page 12 Wellington Multiple Sclerosis Society Inc. Winter 2014 Newsletter
MEMBERSHIP TO THE WELLINGTON MULTIPLE SCLEROSIS SOCIETY AND RECORDS UPDATE
Tax Invoice No: GST Reg. 13-497-5758 August, 2014
To all Members and Supporters
2014 Annual Memberships are now due for renewal. If you are a Life Member (no longer available for new members), we have decided to still send this form as we would like to update our records, and you may choose to give a donation at this time.
Membership Fees to 31 December 2014
Annual Membership to the Society and its services: $50.00 $ 5 Year Membership to the society and its services: $200.00 $ Donation: (if $5 or more is tax deductible) $ Total $
Payment Options
I have enclosed a cheque payable to The Wellington Multiple Sclerosis Society Inc
I have paid using online banking (account details below) Acc Name: Wellington Multiple Sclerosis Society BNZ Acc#: 02-0560-0205899-00 Reference: Your Name Please email [email protected] with details of your payment
I have paid using your website www.mswellington.org.nz/donate (click on orange donate button and enter themembershipamountanddonation(ifapplicable)inthedonationfield)
If you are posting a cheque for renewing your membership or to give a donation, please complete the following: Details required: NAME:
ADDRESS:
TELEPHONE NUMBER:
EMAIL ADDRESS:
NEWSLETTER VIA EMAIL: YES/NO
If paying by cheque, please include this completed form and send it to: Freepost Authority 62517, Wellington Multiple Sclerosis Society, PO Box 15024, Wellington 6243
We ask that if you received this Newsletter by post and you have an email address, would you please consider changing to email delivery. We are still happy to post but are continually exploring opportunities to reduce our costs.
If you have any queries please email us at [email protected] or phone 388-8127
Wesincerelythankyouforyoursupport,100%ofyourpaymentwillgotowardssupportingourthreegreatfieldworkers who provide services and support to people affected with Multiple Sclerosis and their families in the Wellington region.
