September 2008
Where has the time gone! It's already September and things are moving along very well. I would like to thank the organizers of the fundraising events that were held this spring and summer. I understand too well, how much effort is involved in organizing and running special events. Your efforts are more than appreciated, they are critical if we areto make an impact on research to develop better treatments for Scleroderma patients.
Having established our independence from the Arthritis Society, we continue the process of establishing our own identity. We want people to not only have heard of Scleroderma, but to understand a little bit about this disease. To that end we are embarking on the beginning of our public awareness campaign with politicians throughout the country. As you are aware from the last Reporter, we have scheduled a reception on Parliament Hill for the Members of Parliament on September 22nd. Please contact us if you able to attend. We'd love to have a great turnout of patients and supporters to help get our message across. Additionally, we are in the process of organizing a similar event to be held at Queen's Park this fall. We will notify you as the details become available. Please watch the website for updates.
If you haven't mailed in your letter to your MPP about the changes to the Ontario Drug Benefits Plan, I urge you to do so. It is imperative that we send a strong message that we need this decision revisted.
I look forward to seeing many of you at the National Conference is Ottawa. Until then... stay heatlhy!
Maureen Warron-Sauvé
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June 2008
June is Scleroderma Awareness Month! There are so many fundraisers and events planned this month, so be sure to look for upcoming events! There have been three major developments since the last post.
First, is the announcement that the Scleroderma Society of Ontario has receive its Charitable Registration Number from Revenue Canada. We believe that this change allows us to advocate on behalf of Scleroderma patients more effectively.
Second, in keeping with our commitments to increase public awareness, we will be holding an education and public awareness reception on Parliament Hill on September 22nd. This has been arrange with the tremendously generous assistance of the Honourable David Sweet, MP for Ancaster, Dundas, Flamborough and Westdale. This will be a non-partisan event with co-hosts from the opposition parties. David's commitment to furthering our cause with increased exposure is invaluable. This will be the finale to our National Conference being held in Ottawa. Can you imagine if everyone from the conference went to this reception? It would make our situation real to our nation’s leaders, and that awareness will be only beneficial going forward. Plan on attending and help us raise the profile of this disease with our country's legislators. You will find a registration form for the National Conference on Scleroderma soon on the website as well as delivered with the past issue of the Reporter.
Thirdly, it has been brought to our attention that the Ontario Government has made significant changes to the Ontario Drug Benefits Plan which negatively impacts Scleroderma Patients. It is critical that we let our MPP's know that this is unacceptable, and that this decision needs to be reversed. I cannot encourage you enough to contact your MPP, and to have your friends and family do so also. This decision can be reversed, but it will require that we send a strong clear message to our legislators. For more information on this change please see the "Notice".
Finally, it is with heartfelt sadness that I must report on the passing of another of our Board Members. Carl Stager passed away on May 16th. Carl was an active member of the board, and organizer of the Pembroke Walk. His kind and gentle spirit will be missed. Our condolences to his family, particularly Brittany Stager, granddaughter and fellow board member, of whom Carl was so proud.
Maureen Warron-Sauvé
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April 2008
SPRING IS IN THE AIR…..
As I write this, spring is less than a month away; it’s a time of renewal, a time of change. The theme of change is particularly relevant for the Scleroderma Society of Ontario. You will notice the new logo, and our new mailing address. These are the beginnings of much bigger changes that are to come in the next few months. Soon our new website will be unveiled. The new website has been a large project undertaken by Brittany Stager, who is also responsible for the new logo design. She has already contributed so much to the board, and we are grateful for all of her efforts. Cathy Buntain-Jeskie has done an outstanding job of moving forward our application to the CRA for our Charitable Registration. We expect to be hearing very soon about the completion of this process. Stay tuned for further updates.
I should probably tell you a little about myself, and my background. My husband, David and I have been Tim Horton Franchisees for 20 years. We own and operate seven Tim Horton stores in Hamilton. We have a 15 year old daughter, Lauren who keeps us busy with her rep hockey schedule. Life was busy even before I was diagnosed with Scleroderma!! I too am a Scleroderma patient. I was diagnosed in 2002, with diffuse Scleroderma. As many of you can relate, this was a devastating development in my life, a bolt out of the blue. I had always been active, rarely took a sick day, and was suddenly struggling with phenomenal exhaustion and difficulty with everyday functions. I never would have believed it was possible that six years later I would feel well enough to be back to work full-time, and taking on additional responsibilities!! I find that I manage to function fairly well most of the time. Of course, some days aren’t that easy, but I feel blessed to be able to function as well as I do.
It is with extreme sadness that we announce the passing of board member Carroll Vapsva. Her energy and enthusiasm were contagious. Carroll was an SSO Board Member, Mississauga Support Group Chair, and major fundraiser through the Mississauga Chapters Gala Dinner. When Carroll was recently informed that her prognosis was terminal, that her heart was failing and there was nothing else that they could do for her, she focused her energies on the Gala Dinner this coming April 5th. She was determined to the end to make a difference. The passing of such a vibrant fighter will be deeply felt by all who knew her, and all who will benefit from the research she helped to fund. Our thoughts are with Vidas and his family as they attempt to absorb the enormity of their loss. May she rest in peace.
Carroll’s battle has served to re-enforce my drive and commitment to do everything in my power to forward the cause of Scleroderma sufferers. She continues to be my inspiration. It is not acceptable that it takes on average 2.4 years to be diagnosed. It is not acceptable that there is no official treatment protocol. It is not acceptable that life expectancy continues to be an issue. All of these things are simply not acceptable, so what is it that we do to make a difference? It is through education, public awareness and research that we can make a difference. Of course research into orphan diseases is expensive, and fundraising is an integral component of the fight for diagnosis, treatment and cures. Together, we can all do our parts to make a difference. For this reason I am particularly pleased that Peter Woolcott has taken on the role of Director of Fundraising. He has been a tireless advocate, and his energies and perseverance will continue to be an asset to us all.
I want to ensure that you are all aware of the National Scleroderma Conference happening in Ottawa Sept 21-23. It is a rare and tremendously educational opportunity to be in close proximity to both Doctors and Researchers with specific interest in Scleroderma. In addition to the speakers, there are so many workshops, it will be difficult to choose which to attend. It would be outstanding if we could have a large presence in Ottawa. This conference presents an ideal opportunity for us to raise public awareness and our profile with the politicians, pharmaceutical companies and the medical community who are critical to the advancement of our cause. There is strength in numbers! If there is any way you can attend, I urge you to do so. I am absolutely sure you will find the sessions informative and beneficial. I look forward to meeting many of you there.
- Maureen Sauve.
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September 2007
HELLO TO ALL:
Well, where the heck did it go. I hope you enjoyed it because you"ll have to wait a year for another. I'm talking about summer eh!!!!
Special thanks to Babe Sliva and her committee in Windsor, the Hamilton gang, as well as the group in Pembroke, for their remarkable energy and efforts to bring about very successful "walks" in their home communities. These events raise public awareness for Scleroderma which saves the Society countless dollars in paid-for promotion additionally to raising large sums of money for research. But - there is an added benefit. It seems that each of these successes strengthens the local support group, grows it in number and strengthens it in companionship. Please don't overlook the plain truth: it is one of the cornerstones of this Society - to search and reach out to every person suffering from scleroderma to assist and give them our support. These fundraisers and public awareness events enable us to reach out. On a sadder note, ill health is forcing Babe to step aside. Your Society is indebted to you Babe, we wish you well and thank you ever so much, for your successes and efforts put forward on behalf of Scleroderma.
Our appetite for more research is growing. To that end, you should be aware that we have authorized an additional payment of $25,000 to Dr. Murray Baron, a founder of CSRG, for his continuing work with the compilation of a cross Canada data base. Andrew Leask, a researcher in London Ontario at Western University, was approved for a further sum of $30,000. Dr. Sindhu Johnson of the TorontoWestern Hospital, and familiar to many of you for her support of the SSo, made a verbal and detailed written proposal to the Board for financial assistance to research the "Effectiveness of warfarin on survival in idiopathic and scleroderma associated pulmonary hypertension. A retrospective cohort study". Your Board, after review, approved the full amount of $50,589.95. Dr Johnson will provide us with interim written reports and a final report presentation as well as in writing. These monies are the total of sums pledged to date in this fiscal year by your Society for research. Thank you for making this possible'
For your information, several scleroderma sufferers and members of your Society sttended the Rheumatology Programme in May at St Joseph's Health Care Centre London. This is a multidisciplinary programme, with expenses paid for by OHIP save and except for sleeping accommodation and parking, and is carried out over a 2 week period. Keep on the watch for next year's dates. We always receive excellent feedback from the participants. When we know the date's of next year's programme , we will pass them along. The Arthritis and Autoimmunity Research Centre Foundation sponsored a lecture featuring Dr Simon Carette, Director of Rheumatology at UHN and Mount Sinai. His topic was "The mysteries of scleroderma" Dr. Sindhu Johnson, a colleague of Dr Carette, also spoke about her vision for the future - in the clinic and the lab. By invitation of Dr. Johson, our own Jennifer Rai told all in attendance about her experiences being a wife and mother while living with scleroderma. A welcomed presentation. Thank you Jennifer.
As you may be aware, your Board and more specifically its task force, has been investigating the advantages and disadvantages of leaving the Arthitis Society. After several meetigs between representatives of TAS and the SSO discussing our present relationship, your Board unanimously voted in favour of separating from TAS, subject always to membership approval. Several steps have been taken since that decision, all in the best interest of the members and to preserve the integrity of the Society. We have obtained Public Trustee approval, have applied for a proper incorporation and are presently ready with the application to obtain a charitable registered number.. Cath Jeske, a member of our board and a "Bay street lawyer" has completed all of this work - pro bono. Thank you Cathy. Most recently, TAS has decided to disband all Specific Disease Associations, of which we presently are one, to absorb their members under the Arthritis umbrella and to retain our raised and saved funds of approximately $367,000 for the purpose of TAS. Should we receive membership approval to move into the future as a separate Society with a charitable registered number, TAS will cooperate in this endeavour and release our funds to us for the specific purpose of OUR mission statement. You will receive/ have received a letter and ballot looking for you support of the Board's decision. I ask you for your vote to separate from TAS and obtain from TAS these funds that so rightly belong to you. Should you have any questions, please feel free to call me at (905)730-0731 Thank you for your anticipated support.
- Peter Woolcott
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May 2007
HELLO TO ALL:
Its been 2 months since publication of the last Reporter. I am in awe of the total change in the weather. Do you remember February and early March? We deserve the warm stuff and so get out there and enjoy - eh!!!
Allow me to tell you about research for Scleroderma. Dr. Murray Baron, a founding member of the Canadian Scleroderma Research Group (CSRG) has been successful in obtaining two separate grants totaling in excess of three million dollars from the Institute of Musculoskeletal Health and Arthritis. [You can see a summary in this Reporter.] Our Society congratulates Dr. Baron and his collaborators. Be mindful however that each individual member of your Society is deserving of credit and congratulations as well. It is very definitely your membership fees, donations, fundraising events and public awareness activities that have enabled your Society to assist to initiate these projects and to sustain them with funds committed in the amount of $150.000. Let there be no ambiguity in this matter. Your Society is indebted to you for your untiring efforts. Additionally, let me tell you that we are continuing to support Dr. Andrew Leask from London in his Scleroderma research with $30,000 again this year. As well, we have received a request to support a separate Scleroderma Research Proposal which will be reviewed at our next board meeting. These are a few of the products of your support. I can not thank you enough.
June is "Scleroderma Awareness Month". Many Support Groups host Fundraising or Public Awareness activities. Some are sucessful at doing both. I URGE ALL OF YOU to approach the respective heads of your local Council to obtain Declarations or Proclamations in your community that June is Scleroderma Public Awareness Month. Seek out your TV and radio stations as well as the community newspaper. Ask for a scleroderma story time/space. Why not an interview. Opportunity knocks. Reach out to all who don't know about scleroderma and hopefully to suffers who perhaps know all about their challenge with scleroderma but are unaware of a Society who can offer them support. Stop reading right this minute. Formulate your plan and hen follow it.
Carroll Vapsva and that highly energized committee in Mississauga achieved the impossible - impossible for all who preceded. This group organized and sold out a highly successful Dinner/Dance with a silent Auction raising, after all expenses, in excess of $37,000 for scleroderma research. Mark your calendar for April 5th 2008 for the 2nd Annual Gala Event and the best time of your life. Again to Carroll and the committee - a most sincere thank you and giant congratulations.
Hamilton, Windsor and Pembroke are staging their Walks while dove-tailing their efforts with public awareness. Your support is always most encouraging for the organizers. Make a special effort to attend. You will enjoy the day with friends and family. The weather will be great. I guarantee it.
- Peter Woolcott
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February 2007
Hello to all:
I am hoping that you enjoyed a wonderful and memorable Festive Season and that you are coping with winter weather as well as possible.
We have three new members on your board and have already had the advantage of their know how at 2 Board meetings. Carroll Vaspa and husband Vidas have been longtime workers and supporters of your Scleroderma Mission statement and have committed to serving your Board - Vidas has been nominated as the new Treasurer. Maria Colaveccia-Pfuetzner from Burlington is the 3rd new recruit. We are grateful to each of you and to every volunteer working with your Society.
In this Reporter we have increased the font size as well as adjusting our format. Strides, the publication of the Scleroderma Society of Canada will no longer be mailed in its entirety. It is available at www.scleroderma.ca and hard copies can be obtained by calling the toll free number 1-800-279-0632. We will, from time to time, reprint informative articles from Strides and include them the Reporter. We invite suggestions from you, that we might continue to improve this publication.
The Support Group in Mississauga has undertaken the 1st Fundraising Gala Event for your Society. A Dinner and Dance for 300 people with a Silent Auction to be held on the 17th day of March. Well, it was all SOLD OUT by the 17th day of January and extra tables have been added because of the over-whelming ticket demand. All are looking forward to a wonderful, fun-filled evening. The committee deserves a huge congratulations and it is my pleasure, on behalf, to say CONGRATULATIONS to Carroll Vaspa and her entire group. Their energy and talents will culminate in immeasurable Public Awareness in addition to needed dollars for Research.
Again, I urge each Support Group Chair to visit the website "www.cpso.on.ca" to search out and prepare a listing reciting the names, address and contact information of each rheumatologist and immunologist in your local city or the major city/cities closest to you. It will contain valuable information to share with present members and those who call you in the future for your help and support. Please, please prepare this list and keep it up-dated. A list of members in your area, is being prepared and will be forwarded to the Support Chairs for your information.
Over the holiday season there were some media releases concerning the expenses incurred annually by Mothers Against Drunk Drivers [MADD]. You may recall. I want to assure you that your Society does not pay rent, heat, or hydro. We have no full, or even part-time help. We have never, nor do we now pay professional fundraisers or telemarketers. All of the work of our Society is carried on by volunteers, much like yourself, who are committed to our Mission Statement, and more specifically, to uncovering the causes and cure for scleroderma. I am truly indebted to each member, their friends, neighbors, associates and family who volunteer their time and efforts in addition to raising funds for research to uncover this illusive cure.
- Peter Woolcott
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November 2006
Hello to All:
I want to express my most sincere gratitude to each and all members of the Board of Directors for their significant contribution to the Society. All members of the board, except one, are married. Most have children at home and work full or part time and yet somehow they manage to find the time and energy to drive forward the three tenets of our "Mission Statement". Thank you on behalf of the membership and personally. Unfortunately, after two years of contribution, our Treasurer and the Director of Membership are not able to remain on the Board. We will miss your help. Thank You again.
This year the Reporter has been prepared by Cynthia Busch, from Hamilton, and mailed to the membership 4 times along with Strides whenever it was available. In the event that you wish to receive it by email, please let us know. This will reduce costs to your Society. The Windsor Support Group, as well, prepares and distributes some 2000 of their own Newsletter quarterly. It is distributed with their local Penny Pincher publication.
Our website, thanks to Carl Stager, has garnered attention provincially, nationally and internationally. It has proven to be a most successful tool for disseminating information to members and non members as well as for public awareness. Current information is posted regularly.
The present membership stands at 235 including another 10 new members. Both the individual membership of $25.00 and the family membership of $35.00 are fully tax deductible and receipts are issued. To prevent confusion amongst all as to when your membership becomes due, your Board has adopted a plan to allow membership to coincide with our fiscal year. All memberships will become due on April 1st in each year commencing 2007. Those who have paid their membership within 6 months of April 1st 2007 will receive an extended membership to April 1st 2008. The revenue from membership is significant. As important though, is the fact that by joining your Society you give the Board confidence to continue in its work. Your lack of membership isn't as encouraging.
Let me share with you the good news about our fund rising. Windsor, Hamilton, Mississauga, Pembroke and Pickering individually and collectively raised more monies for Awareness and Research than in any previous year - and - they have each started their plans for an even more successful event in '07. Of significance as well, is the fact that many unsolicited funds are being received from the likes of CIBC Wood Gundy, a BIA in Hamilton from the sale of cook books, a professional speaker turning the proceeds of one of his presentations to "my favorite charity" and this list of newer media donors is constantly growing at this time. These events grow awareness at a rate that few san afford through media releases and certainly your Society most definitely can not. Thank you to the organizers of these events and to each donor. Please keep up the good work.
Our new Task Force selected from Board members encouraged the Board to purchase the many articles such as Thank You Notes, car magnets, scleroderma cloths for opening jars etc, book marks and the new publication of the Scleroderma Book, pamphlets etc, etc. In addition it planted the seed for a Support Group Chair Conference which I will talk about later. In addition, this Task Force is inon-going discussion with TAS to improve our relationship to the mutual advantage of all.
Awareness is the "buzz word" to-day that everyone constantly hears. There is huge competition from those who are better prepared financially to buy attention. Having said that, great strides have been undertaken by your Society members. A PSA announcement was prepared and circulated to every radio station in Ontario for release-at no cost to your Society. Statements were made from the floor both in the House of Commons and at Queens Park declaring June as "Scleroderma Month". Numerous media releases surrounded each fund raising event and we were fortunate to again arrange a declaration with the recital of our website in the June statements of the Union Gas Company.
Research remains one of the main goals. In addition to funding projects by Dr. Sindu Johnson and Andrew Leask, we have , after a stringent peer review, issued a cheque for $50,000 to Dr Murray Baron a member of the Canadian Scleroderma Research Group, to assist in the education of interns in scleroderma research. I would be remiss if I didn't share with you the hopeful message of Dame Carol Black, a world renowned clinician from the UK. Dame Carol Black said at the AGM for the SSC that where there was no patient support systems, lack of knowledge amongst the medical fraternity and hopelessness everywhere just 20 years when she started her career. to-day, there is hope, many support systems, huge research projects as well as world wide networking amongst researchers and much patient knowledge, in part, as a result of the internet. Most encouraging
Nattaly Koester, our new Support Group Director, organized and hosted a very successful Support Group Chairperson Conference in Kitchener. All support group chairs, or an alternative, were invited to a Friday evening informal "meet and greet" reception. On Saturday, after a buffet breakfast, a welcoming by Nataly and a few remarks by yours truly, Dr. Khalidi, a rheumatologist from Hamilton and a member of the CSRG, gave a slide presentation to all. His topic "Scleroderma Update" was most informative and was well received by everyone. A question and answer period followed. Heidi Koester did give a short presentation on her experiences with the London Day Program she took part in over the summer. After lunch Aline Laporte from Ottawa and Babe Sliva from Windsor spoke of their experiences as Support Group Chairs and fundraising. All went home with binders full of scleroderma literature and a bag of gifts from the Society as a small indication of thanks for their outstanding contributions. Questionnaires were collected at the meeting's end. We hope the results will be helpful in planning of future conferences. Thank You Nataly.
- Peter Woolcott
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September 2006
Hello to All:
So much to report, so little space. The months of May and June brought wonderful successes to your Society. Public awareness in the forms of newspaper stories, radio releases, proclamations and recognition from your local, provincial and federal elected representatives were happening right across the Province. I guarantee you, next year will meet with an even greater understanding of the sufferings of Scleroderma patients. Start your planning now. The uninformed public needs to learn. Diagnosed victims of Scleroderma, presently unaware of the existence of our Society, must be told that we are here to support and offer help to them.
Our website, www.sclerodermaontario.ca proudly proclaims the unprecedented accomplishments of our fundraisers. A grand total just shy of $100,000 has been accumulated from the events in Windsor, Hamilton, Mississauga and Pembroke. More events are just ahead. The time, energy and dedication of each involved volunteer and even more so, of the chief organizers, is most remarkable. Every event achieved previously unattainable goals. All are presently in the planning stages for 2007. The membership-at-large and the Board are in your debt. We cannot thank you enough. More research may now be possible.
Dr. Sindu Johnson, one of our Medical Advisors, did invite members to attend an education exercise in Toronto. The purpose to teach medical students more about scleroderma. The members present were appreciative of the opportunity. Dr. Johnson advised me that the medical students agreed that the experience of meeting scleroderma patients will stay with them forever, thanks to you Dr. Johnson and to the volunteers. We are most anxious to participate again.
Dr Janet Pope, another of our medical advisors and a member of the CSRG, organized a week clinic in London. We were late being informed. Attendance was not what it could have been. Those who did attend were encouraged and most grateful for this experience. Perhaps in another year , it could serve more people. Dr. Pope is the guest speaker at our AGM in Mississauga and you will have the opportunity to ask your questions directly.
Natlay Koester is the Chairperson of the Society's Leader Conference to be held in Kitchener on September the 30th. As always, her attention to detail and her professionalism are very evident even in the planning. The intent : To network with those present and to educate each other on, perhaps, better methods and procedures to accomplish our mission statement. I urge every Chairperson of a support Group, or their alternate, to make an extra effort to attend. Dr. Nader Khalidi, the arranged guest speaker and a member of the CSRG will talk on "Therapeutics in Scleroderma-an Update" and about his involvement with the CSRG.
At the risk of sparring boredom v.s repetition I again urge you to go to www.epso.on.ca or to call 1 [800] 268-7096 for an updated list of rheumatologists in your area with there names, addresses etc. and whether or not they are accepting new patients. It should be the responsibility of each Support Group to retain this current list. It is most instrumental when answering those inquiries that we all receive. As well, go to http:/scleroderma.org/elettersignup.shtm. This accesses a bi-monthly Newsletter from the Scleroderma Foundation in the USA. There is no cost. You will find it very informative and most useful.
Carroll Vapsva is organizing the Annual General Meeting of your Society being held in Mississauga. Dr. Janet Pope as our Guest Speaker has chosen for her topic " Scleroderma in Canada". Make your plans to be in attendance. The day is a Saturday October ,21 and we will be completed by 1.00pm. Refreshments and snacks have been arranged. Elections for the Ontario Board take place. For a stronger voice and a strengthened Board, please volunteer to sit on the board as a participating member. I hope to see you in attendance. Take care of yourself.
- Peter Woolcott
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April 2006
Hello to all:
The Society, on your behalf , has expressed condolences to the families of Roy Whitehead and Anna Stech. Roy was the Treasurer of our Society for many tears and the widower of a past president who was a scleroderma sufferer Anna was active in the Halton Support Group working diligently and ambitiously at gaining public awareness and raising research dollars. They have moved on but never to be forgotten. Their efforts, on behalf of your Society --- PRICELESS.
Many Support Groups are as busy as the Canadian beaver organizing public awareness and fundraising events. Your Board is on the same busy track. Chris May has already arranged for a statement to be read at Queen's Park in Toronto. Catherine Buntain-Jeske has arranged for a cousin statement to be delivered in the House of Commons in Ottawa. These announcements publicly acknowledge that the month of June is - "Scleroderma Month" - in Canada and they briefly outline the disease and its pervasiveness in our Canadian society. We will attempt tp provide you with details of of time and date on www.sclerodermaontario.ca. Carl Stager, God bless him, has been instrumental in the production of a 30 second public service announcement telling about scleroderma, now being distributed to every radio station across Ontario. Its cost - nothing, its value --PRICELESS.
All Support Groups have or will receive a sample package of proclamations to be tailored to by tham, for a declartion for adoption in your local area for the month of June. You-- yes that's you, reading this message right now, pick up the phone now to call your local Chairperson and offer your support and assistance to guarantee that your own community recognizes " Scleroderma Month'. It would be wonderful to awaken every city town, village and rural area to the needs and challenges that confront victims of Scleroderma on an everyday basis. Union Gas will once again recite in each June billing that it is "Scleroderma Month". New pamphlets, brochures, bookmarks and additional items for education and awareness are on their way. Please, I urge you --- help the Society to help you in your local community.
As I write this message, a questionnaire is being prepared for circulation to each Support Group chair. Hopefully, it will reflect our most sincere efforts to grow and strengthen Support Groupsacros Ontario. It is short. It is self-explanatory. In larger or smaller groups, take the time necessary to complete and return this qyestionnaire. Be candid, be honest, be analytical, be suggestive. We will---as well.
Allow me, for a , moment to talk to you about my very new friend, Nicole Edwards. She is a victim of systemic scleroderma, a Lyme disease sufferer and a recording musician. She was raised in South River, Ontario but moved to Whitehorse, Yukon Territory before developing scleroderma and continues to reside in Whitehorse, a city of 25000. Ah, the wonders of the Internet-- it introduced us. This young woman is visiting her Ontario family while at the same time receiving hyperbaric oxygen treatments in Hamilton, an alternative treatment that is personal. The benefits for Nicole have been most rewarding. No longer able to play the guitar, she continues her musical career as a vocalist. She has arranged three public awareness events in Ontario on her short visit. You too, would be impressed by her strength and focus to defeat her health challenges. She is a most positive example for all of us and for what we are capable of doing. Nicole, I wish only the most for you.
Now, I am asking again, please assist in the organization and support of your local fundraising and public awareness events. Take Care.
- Peter Woolcott
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March 2006
Have you noticed the increase in daylight hours? Wiarton Willee has us looking for an early Spring. Now, how Canadian is that eh, mentioning the weather before all else.
Your Board has created a Task Force Committee comprised of Catherine Buntain-Jeske, Chris May, Irene Goodale, yours truly and Maureen Sauve. We have already met on two occasions. This Committee is scrutinizing the ongoing activities of the Society while it takes particular notice of many earlier successes. Its purpose and function is to recognize and establish the necessary benchmarks that will facilitate your Society to achieve realistic goals with rewarding successes over the next few years. The committee members unanimously agree that our support groups are the Society's most valuable asset. They are the life blood that will nurture us into tomorrow. Arguably, there is a depth of experience on the Committee that together with its energy and insight, will allow us to formulate and outline a skeletal plan to assist the current support groups and additionally, to create and grow support groups when and wherever there is a need. I am asking you to aid and assist. Your wants, needs and ideas are most important Please take part in this process. Get involved. Call me or email to me your ideas. Together we shall be more successful.
June is 'Scleroderma Month'. Start planning now. Would it not be absolutely wonderful to see stories of Scleroderma in Dozens of newspapers throughout the province and also to hear them in our community public service announcements on our radio stations? Perhaps a city hall proclamation. Our focus should be on public awareness. The media in whatever format can be most instrumental in reaching out to so many others, who diagnosed with Scleroderma but are unaware of our Society. So many others, everywhere, have never even heard of the illness but may very well be prepared to support our Mission Statement. Social events too, regardless of the magnitude or type, are huge weapons in the arsenal of public awareness to gather support from the informed and the uninformed. Start now! Grow your ideas! Yet to be imagined rewards, will follow.
Another matter comes to mind. There is never enough medical advice to go around. It is mandatory that each physician, practicing in Ontario, register together with any specialty with the College of physicians and Surgeons of Ontario. There are 190 rheumatologists in Ontario registered by their name, address, telephone number and whether or not they are accepting new patients. This information is available at www.cpso.on.ca or by calling 1(800) 268-7096. Not all rheumatologist treat Scleroderma. However a good receptionist will be willing to direct you to a rheumatologist who is treating Scleroderma in your area. I urge the support group chairperson to compile such a list of specialist in their community. Keep it available, keep it shared.
- Peter Woolcott
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December 2005
I regret to inform you of the recent deaths of Linda Hayes, Lorraine Pelletier, Ina Kay Nagle and June Edith Hinkley. The efforts and dedication of Linda, Lorraine, Ina Kay and June have Immeasurably enhanced the work of the Scleroderma Society of Ontario. We have extended our sympathies to the members of the families on your behalf.
Our public awareness efforts and the new website are bearing fruit. Let me illustrate. A resident of Italy, with a friend who has lung scleroderma, sent an email to me. She wanted information on treatment and references. My protocol is always as follows: I immediately refer the person to our medical advisers and known websites with additional sources of printed materials within my knowledge. I suggest, in very strong terms, that they contact their local support group or provincial society and ask to be kept informed. I am not prepared to give, nor will I ever give, medical or psychological advice. I accept that I am not a doctor, psychologist, social worker or physiotherapist. My focus is to connect the inquiring party. This is my process. What is yours ? I suggest you feel no obligation or responsibility to diagnose and give professional medical advice. Guidance, comfort and support are the only tools we need to provide.
Please allow me to recommend that you take some time to view our new website, www.sclerodermaontario.ca Keep our webmaster informed of scleroderma news and events that could be of interest to the entire membership. It is your website. I also recommend that you visit http://scleroderma.org/e_letter_signup.shtm. This accesses a bi-monthly Newsletter from the Scleroderma Foundation in the U.S.A. There is no cost and you may find it helpful.
At the AGM meeting in Brantford, two new members were elected to the Board. I wish to welcome Nataly Koester and Chris May. I look forward to their contribution to the Society and the Board. Helen Stys and Julie Desplenter, with 23 years of experience between them, decided to take a respite. We understand the need for a break. Your wealth of knowledge and years of experience in the affairs of the Society will be greatly missed. We wish you the best of all the tomorrows. Come back soon.
I thank all for your warm support throughout my year as President. I am taking this opportunity to wish you, your families and love ones, a Joyous Christmas filled with love and wonderful memories and a Healthy, Exciting and Prosperous New Year.
Take special care of yourselves.
- Peter Woolcott
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