ACTION GROUP NEWS

The Concert, featuring Jacob Taurins' original composition and a selection of popular classic string pieces, was professionally recorded and is now available on CD for a very reasonable price of AU$20.00 and we can deliver anywhere by post. If you wish to buy a CD please email essendonnorth@rotaryd9800.org with CD in the subject line and provide your delivery address details. You will be sent instructions for making a direct deposit into the Essendon North Rotary Club account and an invoice for the CD plus postage costs. The CD will be despatched on receipt of payment and you will be notified by email.

It was the 2011 MS Global Dinner and what a night it was!

The Gisborne, Essendon and Keilor East Clubs changed their meeting times to coincide with Essendon North, and about 80 Rotarians and friends and family had a great night. A Ph.D. researcher on MS, Jennifer Sabo gave an interesting presentation on her investigation of remyelination (repair) of nerves damaged by MS. There were raffles, an auction, and the piece de resistance was the performance by Chris Humfrey and his wife Nicole. They wowed us a with a show the likes of which have never experienced before.
The beginning was nice with the first act being a cute joey (baby kangaroo), wrapped in a blanket with its head poking out the top. Then several large, solid-looking black plastic boxes were opened one by one and Chris talked about the biology and habits of each occupant as he held it up for all to see. There was a koala, a huge goanna, huge snakes and a crocodile. For a donation of $20.00 to MS, members of the audience could hold the animals and have their photo taken.
Chris and Nicole Humfry generously donated their services for the night and it was a resounding success: everyone had fun and $3300 was raised for MS research.
Congratulations and thanks are due to Martin and Diana Taurins and to Barry Coleman for their great efforts in organising the event.

19 Nov 2010: The Open Garden event on 7th November attracted a great deal of interest and raised our profile in the community.

RAGMSA is now RAGMSA Inc. We officially became incorporated recently. This will ensure the future stability and security of our organisation and its members.

We are getting into Gear for the RI 2011 convention in new Orleans. Anyone interested is very welcome to join us at our booth, either to chat or just for a chat.

The Email Group brings in new members. We recently got new members from Nigeria.They want to dispel the myth that MS is derived from witchcraft. Keep your contributions coming! They help members all around the world.

On the 7th of July, member Carol Langsford, CEO of Trish MS Research Foundation wrote:

Rotary Club of Strathfield's outstanding support of multiple sclerosis research continued on 18 February.

The Club's ninth successive Golf Day and Dinner for the Trish Foundation was held at Strathfield Golf Club, over $50,000 being raised for MS research.

Rotarian Niall King, ably supported by Ray Wilson and Les Hockley again worked tirelessly to ensure the fundraiser was a great success, attracting support from far and wide, including Corporate Sponsors and other Rotary Clubs.

Niall and his team’s vision and commitment created another hugely successful fundraiser for the Trish Foundation.

“I have shared my wife Carole’s journey with MS over the past 25 years and witnessed the physical deterioration afflicted by this debilitating disease,” said Niall King. “The despair that can at times be overwhelming is somewhat alleviated by people with MS knowing that someone out there is trying to make a difference.”

“The Trish MS Research Foundation gives those people Hope that some day they will not have to suffer what Carole is going through and what Trish went through.”

Jeremy Wright, Executive Director MS Research Australia gave a very encouraging report on the progress in MS research and presented Niall King with a special Rotary International MS Badge.

Chris Castle enthralled supporters with his entertaining renditions, did a great job as Auctioneer and was joined in charming guests by Niall’s grandson Lachlan.

“The Trish Foundation is really indebted to the Rotary Club of Strathfield,” said Foundation Director Roy Langsford. “Over a quarter of a million dollars has been raised by the Club for the Trish Foundation’s research, a huge boost to our funds for research and an enormous credit to the hard work, vision and dedication of Niall, Ray and Les.”

Sincere gratitude to President Kevin Freund, the Rotary Club of Strathfield, Niall King, Ray Wilson and Les Hockley for your very significant contribution to the Trish Foundation and MS research. Thank you very much also to the event’s generous Sponsors – Australian Concert & Entertainment Security, Alvaro Bros, Arbel Investment, Bakehouse Garden Korean Restaurant, Capital Envelopes, CBHS Health Fund Limited, Excellence in Hearing, Homebush Fruit Bowl, Joseph P Saad & Co Solicitors, Korean Community Financial Services, Laundy Hotels, Les Hockley, Niall King, Ray Wilson, SN King Pty Ltd, Strathfield Council and the many generous donors and supporters.

 

 

On 27 May 2010, Member Robert Menzies from Edinburgh wrote:

"Our fund-raising project here in Edinburgh has just been launched.
We have produced an up-market professional looking cookbook to raise funds for medical research into Multiple Sclerosis.
It is a joint project between District 1020 (South of Scotland) and The MS Society, Scotland.
You can find details on the web site www.rotarycookbook.com
Included are guest recipes from celeberity chefs such as Rick Stein, Gordon Ramsay and Nick Nairn. The recipes are truly international in flavour and taste. The book is 220 pages with about 150 recipes, virtually all with high quality photographs.
The book has already been sent out to all 1850 Rotary clubs in UK and Ireland and is getting a great response. It is also now just about to be promoted in UK by the various MS Societies. MSIF will include an article in a forthcoming e-newsletter. The selling price here is £10 ($US15).

I believe the book could have wide appeal in countries such as Australia, USA, Canada, New Zealand, South Africa (plus other English speaking)
However it would be prohibitive to try and post out individual copies to potential customers. So I have a suggestion to make:-

We are looking for partners to promote the book in other countries and the profit is donated to the local MS Society in that country. We would ship the books at cost, freight and a nominal handling fee. The profit per book is £5 ($US 7.50) and we can give lots of tips on the promotion. For UK with a population of 60 million we estimate we can sell enough copies to raise £50,000 ($US 75,000).

If any Rotary Club or MS Society is interested to be involved then please e-mail me direct at menzies.craighouse@virgin.net
and I shall be pleased to send you out a complimentary copy.
Wishing you all a nice week-end,
Cheers, Robert Menzies, President, Currie/Balerno Rotary Club"

25 May 2010: The MS Global Dinner was highly successful and about 98 attendees had a great time. There were many prizes, which were won by purchasing balloons containing lucky tickets. Very popular! After excellent presentations by speakers Carol Cooke of the MS Society and MS researcher Dr Holly Cate, we were treated with an entertaining performance by a hot Latin American dance troupe, who then began teaching us the ins and outs of their dancing. The event raised about $3000, which will go towards supporting Rotarian Action Group for MS Awareness projects, MSRA and MSIFMS research.

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On 28 Dec 2009 Member Hilary White, from Corvallis Oregon wrote:

"I am in this MS thing together with Miriam who is my best friend. Miriam was born Deaf in Victoria, BC Canada, far from the equator. She had Mononucleosis when she was 19 yrs old. We all live in Corvallis, OREGON in US. Miriam's goal was to climb to the highest elevation in each of the US States. She reached 49 of the 50 and attempted Denali, Alaska twice so still only 49. Avonex was successful for several years. She took her shots to climb McKinley/Denali the first try and the medicine was either too hot or too cold and denatured so she was unable to receive benefits from the shots after 2 weeks on the mountain and had an exacerbation before reaching the summit. She tried and tried to inject it but was the wrong consistancy and came through the needle the wrong way and spilled out around the tent.

Her first MS therapy after diagnosis was Copaxone. I learned to give Miriam shots in her back where she could not reach. She gave them to herself in thigh and abdomen, but she developed surface welts, an allergic reaction to this subcutaneous injected medicine. She had no problems initially with Avonex as it is intermuscular.

Later Miriam had hernia surgery and fluid apparantly gravitated from the hernia around outside of her heart and she had to have surgery to remove fluid. Some physicians believe that heart pain may be a side effect from Avonex, not one that happens with everyone, just a few. She did not qualify for Tysabri due to that fluid accumulation or possible paracarditis at another time so was taken off Tysabri.

The neurologist waited until Miriam completed her serious intensive mountain climbing before seeing about another MS therapy that would have to be carefully controlled in the beginning and routine tests to monitor. Her primary care physician prescribed Prednisone to ward off MS attacks while she was travelling and climbing. Unfortunately, each episode was handled with Prednisone prescribed by various specialists over the last 3 yrs and now she is paying for that by being unable to reduce her dosage. CellCept has been the drug of choice to help wean her off Prednisone (Cell Cept normally given to patients for anti-rejection following organ transplants) This is a very expensive drug and has side effects, but Miriam is very bravely attempting to tolerate Cell Cept and dose is having to be gradually increased. Her neurologist wants her Prednisone dosage to go way down to around 20 mg before she will attempt to introduce another choice of MS therapy. So we are in for the long haul now, this is a difficult period. Miriam hikes with me some days and other days depends on a walker to get her out of bed. This is a top athlete. She will be up on our 2 story ladder helping me paint our house, but can be unable to move the next day due to so much pain. This is really up and down, but the 5 lesions on her brain have not increased in size as seen on MRI over the years. Bone density dropped way down while on Prednisone over the last 3 yrs. Side effects have included organ damage and swelling in face, arms and midriff pains which may be "THE MS hug?" Drs are uncertain, but prescribe pain meds to help.
A nearby town, Eugene, OR had a newspaper article about a lawyer whose MS got so bad that she had to take early leave from paid legal practice, but took on a pro bono class action case to change WA state law that limits amount of pain meds to those suffering MS living in Spokane, WA which is a mecca of people with MS.
Jacob, we hope this is what you had in mind, you may shorten this or clarify as needed.
Hilary & Miriam"

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30 Dec 2009 Member Cherie Binns, from Rhode Island USA, reports:

"Jacob,
My Rotary Club and District know of my MS. They are aware of the restrictions that MS can place on an individual and are also knowledgeable that MS shows itself differently in different people. As such, I was chosen, despite the MS, to lead our District's GSE team to India in the month of January 2008. While there, I taught in the Medical/NursingCollege in Nellore, Andra Predesh, India on recognizing and treating auto-immune disorders, in particular MS. They told me that they had 25 doses of IV Solumedrol in 4 places throughout the Province for those with MS who needed immediate therapy. The only immunomodulating drugs they use there are Avonex and half dose Rebif (22mcg /dose x 3 doses/week). They do not have access to Betaseron or Copaxone in the area I visited.

I keep active as an individual (rather than a voice of Rotary) with weekly email updates on literature searches world wide. As an MS Certified Nurse (MSCN) ...an International Certification from the Consortium of MS Centers...I am one of only about 500 Registered Nurses World Wide who teach management of disease ramifications. I research treatment options, new drugs in the pipeline, symptom management and communicate these to physicians, nurses and patients in the World Wide Community.

Currently, my weekly contacts encompass persons throughout the USA, Canada, The UK and Australia, and several Asian and African States and Countries. I think there is only one contact currently in South America.

Rotary, I find, is focused almost exclusively on the eradication of polio at this point in time. I do not envision that MS will ever become a focus of Rotary disease management in the form of 3-H grants or even local fundraising in the area in which I live. Approximately 1 in every 60 people in the area in which I live are living with MS or someone in their family has MS. ( We are an area considered to have a high concentration if the illness.) There are many resources available to us here both in support services and insurance coverage for therapies.

I also write articles on a regular basis for MS Views and News, a web based home for information solely on the management of MS Symptoms. The weekly newsletter goes to 50+ countries and into 1.2 million households electronically each week. "

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Oct 2009 Carley Blixt, Manager, Program Office of MS Australia - ACT/NSW/VIC gave us the following update on accommodation for young people with MS.

"My colleague, Greg Hutchings, spoke to me the other day about all the good work you do with Rotary to promote awareness and seek a cure for MS. Greg indicated that you were soon to be attending a meeting of the Rotarian Action Group for Multiple Sclerosis Awareness, and would like to provide your fellow Rotarians with an update about the progress on accommodation for Young People with MS. He has asked me to provide a high level overview, and I am more than happy to provide more detail on anything you wish.

VICTORIA

The McKinnon project is a residential group home that will house six people with MS, and it adjoin some housing for primarily elderly, provided through Port Philip Housing Project. This project, a joint venture, is progressing nicely now - our partner organisation Port Philip Housing Association are now past the objections phase, and we are tendering jointly for a builder. We hope this will mean a cost savings in construction that will mean we can direct those funds to other services to people with MS. It seems likely at this stage that the build will be complete in the 3QTR of next year. Additionally, negotiations with the Department of Human Serviecs and Department of Housing have been excellent, and mean that we will now retain the three places in Blackwood street. This means a net gain of 6 rather than three places in the local area. Also the renegotiation of the funds supplied by government means that we able to provide the level of care and support to maintain quality of life, without as much of a top up payment from our fundraising. A great result.

The organisation has taken a decision to retain the Watsonia site and plan for future acommodation or respite on the balance of the land. As you might be aware, the facility is in need of refurbishment, and no longer conforms to modern care delivery models. Earlier, their had been plans to develop a 10 space facility on half the land. But futher research into models of care for people with MS have led to the refinement of our accommodation strategy since that time. Now, MSL intends to retain the land and provide additional complimentary services on site, pending raising the capital for the redevelopment.

NEW SOUTH WALES

As you are no doubt aware, the Studdy Centre in Lidcombe NSW is on a significant parcel of land. As previously mentioned, there has been a lot of work and research done over the last 18 months which have cemented our view about the best practice for caring for people with MS. With McKinnon as a contemporary example, we have been working with an architect to develop models that meet both the needs of people living with MS to have quality of life, with the supports required from flexible levels of care, allied health and nursing. The amount of land has allowed us to propose some village like options that cater to people at all levels and abilities, from units where families can live with the client, to homes where people with the most significant disabilities have freedom and support.

The redevelopment would accommodate something around 100 people on 6 ha in sympathy with the adjoining development. The site will retain a parklike feel. The HUB building, from where we currently deliver services, would be redeveloped as a gym, cafe, shops, and be recreation and a resource to the whole site, as well as the adjoinging Australand development. Early discussions with DADHC, NSW health department, have been very favourable, and we will shortly be workshopping the idea further together. We continue to foster our relationships with government and promote our continuous care model.

And of course we continue to partner with other organisations to advocate and look at other ways we can assist young people to move from nursing homes into appropriate home like care. And to support all this activity, we are currently developing a capital campaign to raise money to support the development of these and other sites."

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