Insight – Spring/Summer 2015

images-1                    INSIGHT – SPRING/SUMMER 2015

President’s Report

Greetings to our SASK members and friends: I hope this newsletter finds you enjoying some warm sunny days.  Most people with scleroderma long for this time of the year when they can sit in the sunshine and soak in vitamin D.  It is also pleasing to have longer days and to see the trees bursting with new buds while the grass is quickly turning green.  Soon our gardens and flowers will add more colour to our world.

Our Support Group Meeting was held on April 18th in Regina, with 10 members in attendance.

Guest speaker, Dr. Todd Sojonky, a Doctoral Registered Psychologist, spoke on Mindfulness Stress Based Reduction.  Mindfulness means to stay in the present moment.  Most of us are thinking in the past or the future and often in a critical and judgmental way.  We human beings talk to ourselves a lot about ourselves.  This self-talk is often cruel and rarely kind.  Mindfulness is a learned practice of breathing and staying in the present moment.  Investigating our thoughts and letting them be.

Dr. Sojonky suggests we spend 15 to 30 minutes each day in this practice.

Gerald Shauf has resigned from the position of Treasurer.  On behalf of our Association I would like to thank Gerald for many years of dedicated service.  He has often gone above and beyond for our support group and his service has been most appreciated.  You will find a tribute to Gerald further in this newsletter.

Stephen Foster has accepted the position of Treasurer.  I would like to welcome Stephen to our executive.  Please see Stephen’s bio and introduction in this newsletter.

Best wishes to all for a happy, healthy summer.  Please join us on October 17th for our next support group meeting.  It will be held at Wascana Rehab Centre in Regina.

Louise Goulet

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During our lunch break we meet in the cafeteria and enjoy time socializing.  I have included a few pictures below.

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Left to right:
  Shirley Gillander,  Janet Campbell, Stephen Foster,  Andy Sereda

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Left row:  Roberta Nichol, Shirley Gillander, Janet Campbell, Stephen Foster, Andy Sereda

Right row:   Ken Goulet, Joyce Kellington, Gerald Shauf, Olga Sereda

Pic 1

 Left to right:  Olga Sereda, Gerald Shauf, Joyce Kellington

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June is designated “Scleroderma Awareness Month”

As June is designated Scleroderma Awareness Month – not just in Canada – but around the world, last year the Scleroderma Society of Canada (SSC) -proudly partnered with the United States’ Scleroderma Foundation and Scleroderma Research Foundation in the development and implementation of a public awareness campaign,  “Hard Word – Harder Disease.” 

The campaign’s theme acknowledged the difficult obstacles encountered when talking about the disease: pronunciation (hard), tissue condition (hard), and the many manifestations of the disease (even harder).  Several different channels were used to get the message out.  Regularly scheduled posts on Facebook and Twitter served as the campaign’s backbone.  These posts and tweets included information and links to a specially created website, www.SclerodermaAware.org.    The website asked visitors to help spread awareness and directed them to any of the three partner’s websites.

Additional campaign elements included a widely distributed news release that was picked up by major news outlets.  Along with alerting the media, the message was shared at one of the busiest places in North America, the CBS “Super Screen” digital bill board on 42nd Street – Time Square – in New York City.  With over a million messages and web-site view, the campaign proved a success.

The campaign brought international attention to the seriousness of scleroderma and the mission and mandate of the SSC –to promote increased public awareness, advance patient wellness and support research and education in the area of scleroderma – with the ultimate goal of finding a cure.

With a solid partnership developed amongst the Scleroderma Society of Canada, the Scleroderma Research Foundation and the Scleroderma Foundation, a positive step has been taken to help us become stronger, as together, we seek to inform people about scleroderma as a “Hard Disease”.

This year SSC will partner again with the US Scleroderma Foundation and Scleroderma Research Foundation  and  use the same theme and title ‘Hard Word – Harder Disease’. 

I would like to invite you to go to: SclerodermaAware.org web site and  “TAKE THE PLEDGE”, the pledge asks that you share the information with several other individuals. There is a great tool that the Scleroderma Foundation has and it is on the SclerodermaAware.org site – a body with internal organs (what is the exact term ??) and as you click on a particular part of the body – it actually will give details how and what scleroderma affects.

Some other awareness activities taking place in June across Canada include: walks/runs in Ontario, Manitoba, Quebec and Nova Scotia. The Scleroderma Association of BC will sponsor their 4th Annual Scleroderma Ride for Research.

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We do not remember days,
We remember moments.

Cesare Paverse

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 If you have any suggestions, health tips, or stories you wish to see featured in Scleroderma Insight please mail or email them to Janet Campbell. We would like to hear from you and share your ideas/stories/health tips with all our members.

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Do not dwell in the past, do not dream of the future, concentrate the mind in the present moment.

Budda

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 Saskatchewan Parking Program for the Disabled: Phone: (306) 374-4448?Handicapped parking permits cost $10.00. Successful applicants receive parking placards allowing them to park in designated areas for handicapped. Applications are available at any branch of Saskatchewan Abilities, or any motor vehicle issuing office. Ask your doctor if you qualify. Try to look at getting the placard as a way to make your life easier.

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A Tribute to Gerald Shauf

GES
At the spring meeting of SASK on April 18, 2015, our long-time Treasurer Gerald Shauf resigned.  We wish to thank and recognize Gerald for his long and devoted service to our organization.

Gerald and his late wife, Linda, joined our self-help group soon after its inception.  In time, both became very involved in the group – Linda as Newsletter Editor in 1991 and Gerald as Treasurer in 1993.  They remained committed, with Gerald maintaining his position until now, and Linda serving as President from 2000-2006.

We have been very fortunate to have both of them as members, setting a fine example for all of us.

Gerald was also instrumental in setting up our website and has been the web master for our SASK website.

During his tenure, records show that we have contributed nearly $100,000 to Scleroderma research.

May we express our sincere thanks and appreciation, Gerald, for all your work on our behalf.

Written by: Olga Sereda

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 SCLERODERMA RESEARCH NEWS

Research continues to advance an understanding of better ways to treat symptoms, prevent organ damage, and improve the quality of life for people with scleroderma until a cure is found. There are a number of leading edge scleroderma research projects underway in Canadian universities.

The Scleroderma Society of Canada has a section on it’s website that regularly updates this information. Here are highlights from just two of these:

Improved Diagnostic Criteria for Systemic Scleroderma

Dr. Janet Pope from the University of Western Ontario is conducting research to improve diagnostic criteria for persons living with systemic scleroderma. One third of patients do not meet the current criteria, most of which were established in 1980.

Scleroderma: A Program to Study Outcomes and Experiences Important to Patients

Dr. Brett D. Thombs from McGill University/Lady Davis Institute for Medical Research does research in behavioural health. In the past, most scleroderma research has focused on the physiological.  Dr. Thombs’ research is trying to evaluate and understand the experiences of patients living on a day-to- day basis with pain, fatigue and depression. Quality of life is important to Dr.Thombs and his team.

 PHARMACEUTICAL NEWS

Apricus Biosciences, an American biopharmaceutical company, has begun a clinical trial for RayVa(tm) the company’s frontline candidate for scleroderma-related Raynaud’s phenomenon. This ointment has shown the ability to increase blood flow locally, and can potentially reduce symptoms of Raynaud’s and subsequent digital injuries.

TECHNOLOGY NEWS

Team Soletics is developing a wearable technology platform that is similar to existing heated or compression gloves for Raynaud’s. The gloves have a predictive heating effect that automatically informs where heat needs to be applied on a finger-by-finger basis. They detect changes in temperature before you feel it and adjust accordingly.

The gloves are very thin, meaning that they can be worn indoors or outdoors. This added dexterity allows for typing, knitting and more. When the snap-on power band is removed, they are completely washable.

Rosanne Queen, the President of the Scleroderma Association of British Columbia, has inquired about the possibility of custom fitted gloves. She sent pictures of the disfigured hands of one of their members. Apparently it is indeed possible.

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Introducing Stephen Foster

Stephen Foster
I was born and raised in Regina. I attended St. Patrick grade school and O’Neill High.  I received a Certificate in Data Processing from U or R and was a Computer Programmer/Analyst for the bulk of my working career.  I have been working part-time at a Property Management company for the last 8 years. I enjoy playing tennis and traveling.

I was married to Sharon (nee Bonokoski) for almost 33 years before she passed away on May 18, 2014 from scleroderma and pulmonary hypertension. She was 66 years old. Sharon grew up on a farm near Torquay, SK.  She was an avid curler in her younger years.  We enjoyed camping and traveling together, and spending time with family. Sharon had a very strong faith life.

We have 2 wonderful daughters, Christa and Michelle.

Christa lives on an acreage near Lloydminster (on Sk. side) and works as a mechanic in the oilfields, servicing the pump jacks. She has 3 horses, 2 big dogs and 2 old cats.  Her hobby and passion are horses – she trains horses and has trained her 3 horses very well.  Christa has a steady boyfriend that farms in the area.

Michelle received her Social Work degree from U of R and is currently working at Social Services – Income Assistance. Michelle married Mike Neigum on May 11, 2014 (Mother’s Day) at Pasqua Hospital ICU so Sharon could see them get married!  On August 2, 2014 they had their original wedding (recommitment of vows). Michelle has been involved in Rhythmic Gymnastics for about 25 years – she goes to an International Gymnastic tournament in Finland in July 2015 as a gymnast for Team Saskatchewan.

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No act of kindness, no matter how small, is ever wasted.              – Aesop                    

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DISCLAIMER:  The Scleroderma Association of Saskatchewan does not endorse any drugs or treatment. We wish only to keep you informed. Please check any treatment with your own physician.

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Life is really simple, but we insist on making it complicated.               – Confucius

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The 2015 Scleroderma National Conference, September 17-19, 2015

Connect with the scleroderma community this September in Hamilton at the 16th annual Scleroderma National Conference as we help scleroderma patients and their families, friends and healthcare professionals become advocates for better care both personally and nationally.

Why You Should Attend

Be part of the most relevant, densely-packed educational and networking opportunity available in Canada for people interested in scleroderma.

Connect directly with healthcare professionals

Learn about treatment trends and developments that are improving quality of life for persons with scleroderma and their families

Discuss important issues regarding scleroderma and associated diseases

Access cost-effective professional development and health education

Become more empowered to take control of your health and treatment options

Share experiences with patients, families and friends

Discover ways to educate your community about scleroderma.

Engage with the scleroderma community.

Expand your personal support network.

Learn how to manage the stress and emotions of living with scleroderma.

Program Schedule

We are currently working on creating an educational and engaging conference program. Please visit this page again soon for updates.

NEW-Youth Program

We are currently in the early stages of planning the first Scleroderma National Conference Youth Program. If you have suggestions or recommendations for program content, or if you would be interested in participating, please contact Anna McCusker at Scleroderma Ontario: anna@sclerodermaontario.ca

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What do we live for, if not to make life less difficult for each other.

George Elliott

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 SASK BOARD MEETING

 (MINUTE HIGHLIGHTS)

The spring meeting of the Scleroderma Association of Sask. was held at the Wascana Rehabilitation Center in Regina on April 18, 2015 with 10 members present.

A moment of silence was observed for those deceased since the last meeting – Louise Partington and Eunice Bilokreli.

The Minutes of the October 2014 meeting were adopted as was the Treasurer’s report.

In new business, Joyce Kellington had a plaque put on the Maple Leaf picture awarded to us at last year’s conference, which will be displayed at Wascana Rehab Center probably in the main entrance.

Janet Campbell reported on the Regional Support Committee formed to work with SSC on new pamphlets and distribution of information on Scleroderma.  Their work is presently on hold, as SSC doesn’t officially recognize the group and several provinces are no longer represented.

Louise Goulet gave information about development of a Training Program for Peer Facilitators of Scleroderma Support Groups.  For example, Northern Sask or Saskatoon could have support groups in co-ordination with the SASK.  She also noted that Research Groups in Canada, the U.S.A. and other countries are working toward a goal of developing new treatments for Scleroderma.  One area is the reversal of fibrosis in lungs and skin.  There was a written report on research of the B.C. Scleroderma Clinics.

June is Scleroderma Awareness Month.

The 2015 National Convention will be in Hamilton, ON on Sept 17-19 at the Sheraton Hotel.

Shirley Gillander will try to arrange a guest speaker on Laser Therapy for the Oct 2015 meeting.

Members were encouraged to contribute items to the next edition of Scleroderma Insight, perhaps personal histories.

It was decided that only highlights of the Board meeting be published.

The SSC newsletter is not being received by members even though it is paid for as part of our membership fee, perhaps because the newsletter is available on the website.  There was discussion as to whether we should stop sending that part of our membership fee to SSC.

Following a lunch break, we proceeded with election of officers.  There were no candidates for president.  Louise Goulet could continue to be a resource person and suggested developing a website, which could be set up by Gerald Shauf.  Steven Foster could possibly act as Treasurer if the position is vacant.  We will see what develops over the next six months and whether our October booking will be used.  The status quo could continue for the rest of 2015 and if nothing changes, the organization would be dissolved by June of 2016.

Guest speaker Dr. Todd Sojonky was introduced by Roberta Nichol.  He is a Registered Doctoral Psychologist and spoke on Mindfulness Based Stress Reduction.  The history of Mindfulness training is 2000 yrs old.  Several books on the topic were displayed and handed around.  Dr. Sojonky said most of us live from the neck up – you are what you think.  People with stress and anxiety are really in the past or future and the reality is we really don’t need to plan anything.  Mindfulness meditation is a combination of meditation and breathing and we were asked to do this for a few minutes.  Mindfulness is staying in the present moment as if life depended on it.  An 8-week program can change your brain.  There is mind-body connection.  e.g. Embarrassment causes blush.

We suffer from two “diseases” – auto-pilot and busy.  In the 8-week program, one focuses on a new mechanism – new beginning, letting go.  The key is to rewire the body and brain – live in the present moment on purpose.  This entails a 20 min per day program for life, plus some group work.

In life, there are two kinds of consumption – oral and mental.  Oral consumption is processed for body use.  In mental consumption, data is not processed, just stored until we collapse.  Data can be processed by mindfulness meditation, learned in the 8-week program.

Buddhism has a four-fold mantra – SHHE.  May I be Safe, may I be Happy, may I be Healthy as possible, may I have Ease of being.  This can be applied to oneself, to loved ones, to all people in the world, to others with whom we have conflict.

Dr. Sojonky replied to questions presented to him by members.

The executive will remain the same except that Steven Foster will replace Gerald Shauf who resigned his position as Treasurer.  Gerald was thanked for his many years of service.

After this issue of Scleroderma Insight hard copies will no longer be sent to people who are not paid-up members.

The fall meeting will be on Oct 17, 2015.

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 Scleroderma Association of Saskatchewan  Executive

President:
Louise Goulet
Phone: 306- 584-1950 louise.goulet@sasktel.net

Vice-President:
 Shirley Gillander
Phone: 306-525-6377 sdgill@sasktel.net

Recording Secretary:
Olga Sereda
Phone: 306-693-1936 No email address

Corresponding Secretary
Norma Redman
Phone: 306-532-4449 norperredman@sasktel.net

Newsletter co-Editor:
Janet Campbell
Phone: 306-757-0962 janet.campbell@uregina.ca

 Treasurer:
Stephen Foster
Phone: 306-545-6653 stephenfoster54@gmail.com

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SASK Fundraising and Awareness Items:

We have the following available:? Floral note cards: There are 8 different floral designs in each package. They are very pretty cards to use or give as gifts. The cost for a package of 8 notes and envelopes is $6.00.

Magnetic ribbons: These are similar to the lapel pins. They are 8 inches x 2.5 inches and are $2.00 each. Put them on your car or your refrigerator.

Lapel pins: The attractive lapel pins are dark blue with Scleroderma printed on them in white letters. The cost is $3.00

Please contact Louise Goulet (306) 584-1950 or Janet Campbell (306) 757-0962 for more information or to place an order.

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Once you replace negative thoughts with positive ones, you’ll start having positive results.

– Willie Nelson