Research - Scleroderma Society Of Canada
Transcription
Research - Scleroderma Society Of Canada
Winter - December 2010 Sclerodermareport Scleroderma Society of Ontario Newsletter President’s Message A Generous Contribution of $25,000 from The Carpenter’s Union Charity Golf Tournament Maureen Worron-Sauvé - President In this Issue • Geting Under the Skin: A look at Body Image in Scleroderma • Canadian Scleroderma Research Group: Names from left to right are in regards to above picture are, Gemma Beis, Sonia Mlacic, Claudio Mazzotta and Maureen Sauvé. May 31, 2010 – The Carpenter’s Union Annual Charity Golf Tournament took place this year at Angus Glen Golf Course. The Carpenter’s Union made a generous contribution of $25,000.00 to the Scleroderma Society of Ontario from the proceeds of the tournament. Many thanks to Claudio Mazzotto and everyone at the Carpenter’s Union for their support. Golf Committee: Claudio Mazzotta, Carlos Pimentel, Gemma Beis, Julie Palombo, Cristina Selva, Brenda Montesano, Sonia Mlacic. Scientific Research Projects • The 11th Annual Conference & AGM Halifax, NS - Nov. 26 & 27, 2010 • Fanny’s Gift • Hamilton Slceroderma Group • Is a Support Group for You? • Past Events – Special Thanks 2010 Scleroderma Society of Ontario Mission Statement The Scleroderma Society of Ontario is committed to promoting public awareness, advancing patient wellness and supporting research in Scleroderma. The Scleroderma Society of Ontario is committed to protecting your privacy and maintaining confidentiality of your personal information. We do not sell our membership list to anyone, save and except for the Arthritis Society of Ontario. We do not trade this information with others that may use it to contact you about their own products or services. Events Getting Under the Skin: A Look at Body Image in Scleroderma Submitted by Lisa Jewett Y ou walk into a room and feel eyes shifting to where you stand. You look around and see people turn, smile awkwardly, or shift away. Thoughts race through your head. “Are they looking at the tightened skin on my face? Or is it my swollen and bent hands? Do they notice my disfigurements?” How do you respond? Sit down and face them, walk away, or try and avoid their stares? Living with scleroderma means not only learning how to cope with the medical symptoms of the disease but also how to deal with other people’s reactions. Unwanted attention, questioning stares, and misunderstanding all go hand in hand with the appearance related changes that are common in scleroderma. The bodily changes associated with scleroderma are diverse and unique, which makes dealing with them all the more challenging. Feelings about body image are an important part of self-esteem for most people, whether living with a chronic illness or not. Given this, it is not surprising that dissatisfaction with body image can detract from overall quality of life. So what do we know about body image among people living with scleroderma? Unfortunately, the answer is, not very much. Most research on body image comes from studies of people with eating disorders and weight issues, which are typically not the focus for someone with significant visible disfigurements, as in scleroderma. My goal as a Master’s student and trainee with the Canadian Scleroderma Research Group (CSRG) is to address this current gap in a much-needed area of research. Specifically, my projects aim at uncovering what aspects of body image are relevant for people with scleroderma and how best to measure them. Body image is a complex concept, with many definitions and dimensions, so clearly identifying and targeting specific aspects of interest are highly important, as well as establishing proper measurement of each. Furthermore, when developing questionnaires, it is essential to make them feasible to administer, by keeping them simple and as short as possible so that you, the respondents, can realistically fill them out! When I first started reviewing the literature on different aspects of body image, I came across the topic of body image avoidance. It involves the avoidance of objects and/or situations because they cause distress or concern about the body. This can entail avoiding social situations where attention is given to appearance or hiding certain body parts that might provoke anxiety during everyday interactions. Ironically, the fear of being negatively evaluated or judged by others based on appearance can sometimes lead to what others perceive as defensive or avoidant behaviours and may actually bring out negative responses from others. This might be described as a vicious cycle where uncomfortable attention is given to disfigurements from scleroderma, and attempts to avoid this attention can make a person with disfigurements appear standoffish or otherwise uneasy, which impacts relationships negatively. So far, avoidance or anxiety related to body image has only been measured in women with concerns about weight, even though it is clearly important for people dealing with physical changes from injuries or diseases like scleroderma. Due to the fact that body image avoidance has only been studied in women with weight issues, the questionnaire used to measure it, is specific to those concerns. Our task was to adapt this original tool in order to make it applicable to the experiences of people with scleroderma. A team of experts who work in the field helped to create new items that resulted in a scleroderma-specific body image avoidance questionnaire. Some examples of items from this questionnaire include asking respondents how frequently they wear clothes that hide changes to the skin, or how often they hide their hands so that people cannot see them. In addition to body image avoidance, other relevant body image issues for people with scleroderma include feelings of discomfort in social settings due to appearance, as well as dissatisfaction with particular body parts. These two topics have been examined in individuals with disfiguring burn injuries, through a questionnaire developed specifically for that group of people. That questionnaire, however, has items that are less central for scleroderma (e.g., how satisfied are you with the appearance of your legs), in addition to being repetitive and quite lengthy; therefore making it less realistic to administer to people who are also answering many other questionnaires, such as those who participate in the CSRG Registry. Given this, we undertook another project that involved adapting the original questionnaire measuring social discomfort and body image dissatisfaction in burn victims, to make it more applicable to the scleroderma situation and more easily completed by respondents. This entailed only keeping items that were specifically related to scleroderma, such as those asking about dissatisfaction with the hands and face, in addition to reducing the number of repetitive items about social discomfort. We developed a shorter, six-item questionnaire, found that it was as accurate as longer versions, and we are currently integrating it into the CSRG questionnaire package. These projects related to uncovering and measuring important body image dimensions in scleroderma are just the beginning. They constitute a necessary first step to take before we can move toward our ultimate goal, which is to adapt or create educational material that targets coping with important body image issues for people with the disease. To date, no interventions have been specifically developed for scleroderma, but there are sources of information that exist for other groups that can be useful for scleroderma. One organization, Changing Faces (www.changingfaces.org.uk), is a non-profit group from the United Kingdom whose main goal is to provide support for individuals touched by disfigurement and to increase public awareness about issues surrounding disfigurement. Changing Faces focuses largely on issues related to body image avoidance and social discomfort due to appearance. For instance, the organization provides workshops that teach strategies on enhancing overall self-esteem and on learning how to manage the reactions of others in different social settings. Additionally, Changing Faces has produced and made available resources, including DVDs, booklets, and guides, designed for both healthcare professionals and individuals living with disfigurements. We are planning to build on this work from Changing Faces to develop interventions for scleroderma based on their principles and from information that we plan to gather by essentially asking people with the disease to tell us about their lived experiences with respect to their body image. Knowing your body to look a certain way for many years of your life and then suddenly seeing disfiguring physical changes can be devastating. Body image is an important part of identity and learning how to accept and deal with significant changes to your appearance is no small task. Acknowledgement and attention to this matter is the first step, but there is still much more to be done. SSO Research Canadian Scleroderma Research Group Scientific Research Projects The Scleroderma Society of Canada presents its S cleroderma is a disease characterized by fibrosis or “scarring” of the skin and internal organs. This fibrosis is caused by the laying down of excess collagen in the tissues. This collagen is produced by cells called fibroblasts. What stimulates fibroblasts to be overly active in scleroderma is not known. Three different research projects at the CSRG are working on discovering the keys to this fibrosis. Our commitment to these projects is $100,000 per year for three years. Dr. Marc Servant, Ph.D Dr. Servant’s lab has been looking to see if the same antibody that stimulates fibroblasts may also be stimulating blood vessel cells. The 11th Annual Conference & AGM in Halifax, Nova Scotia, Nov. 26 & 27, 2010 “Living Well With Scleroderma” His early work has indeed shown that there is an antibody in blood that does stimulate blood vessel cells. This is a very exciting development and our plan is to pursue that finding with many more extensive studies. P resentations will concentrate on learning new ways and new skills to manage and cope with some of the daily problems we face with scleroderma. We hope these new skills will contribute to a better quality of life and a more fulfilling life style despite some limitations created by the disease. We will utilize the holistic model of health, concentrating on the mind, body, spiritual dimensions of health and healing. We hope you will consider travelling to eastern Canada this fall to learn how we “Live Well with Scleroderma” here in Nova Scotia. We look forward to your visit with us and hope you will enjoy our warm maritime hospitality. Dr. Mark Trifiro, MD Has taken a very new approach to studying the blood vessels. For the first time, using a new tool called laser capture microdissection, he has been able to isolate and remove individual blood vessel cells from scleroderma skin and study those cells isolated from the other tissue around them. The conference will be held at the Westin Nova Scotian in Halifax (www.westin.com) . The registration fee is $30.00. Using genetic techniques they are studying if there is something abnormal about the proteins on the surface of those cells. This could prove to be an important clue to why the vessels are so abnormal. Dr Andrew Leask, Ph.D We and others have shown that the pro-adhesive matricellular protein connective tissue growth factor (CTGF/CCN2) is overexpressed in fibrotic diseases including scleroderma. CTGF has long been proposed as a target for anti-fibrotic drug intervention in Ssc. Mice lacking CTGF are resistant to bleomycin-induced skin sclerosis and that these mice lack microvascular pericytes suggesting that CTGF may be selectively involved with fibrogenesis. • Determine the effect of reduction in CTGF expression on overexpression of genes by FASSc fibroblasts. • Determine the effect of reduction in CTGF expression on adhesion and contraction of ECM; • Determine the effect of reduction in CTGF expression on adhesive signalling in SSc lung fibroblasts. SSO For more information please contact: Mary Beth Clark (902) 423-3942 [email protected], or Michelle Richard (902) 835-1571 [email protected] or [email protected]. More details and registration forms are available on the SSC website, www.scleroderma.ca Research Fanny’s Gift By Elnora Magboo I f your doctor tells you that you have a rare, incurable disease, what’s the first thing that will come to your mind? Will this change the way you live your life? In 1978, Fanny Yarza was working as a Registered Nurse at The Mississauga Hospital (now, Trillium Health Centre) when one of her visits to a dermatologist turned her world upside down. Tests brought about by a noticeable discolouration behind her ear revealed that she has scleroderma, a rare autoimmune disease that causes the skin and other organs of the body to become hard and thick. Also called progressive systemic scleThanks also to Mona McLeod and her volunteers who generously took in the rosis, damage can affect the lungs, pledgesheets and handed out goody bags to all the walkers. Norma Augustine and kidneys, the digestive tracts, lining of Kathy Donn were in the back busy tallying the funds pledged by the walkers. joints, tendons and muscles. With no known cure, Fanny’s first thoughts phizes Fanny who estimates at least 50 countries she were, “how serious?” and “how long would I live?” has visited so far, experiencing different cultures and exotic cuisines and a “variety of toilet paper” she joked. A single woman with a zest for life and love for adventure, the doctor’s pronouncement initially overwhelmed Fanny---but not For 32 years, Fanny has been living with scleroderma for long. Her research revealed that although incurable, people and the neurological and physical challenges that inwith scleroderma can go on to live for years, depending on the clude mental slowness, impaired vision, clumsiness, shortstage or gravity of the disease at the time of discovery. ness of breath on exertion, crippled fingers and associated pain 24/7. Fanny wasted no time to mope, mourn or let the debilitating disease take control of her life. “In my preoccupation with the “Despite suffering with this disfiguring, disabling and incurday-to-day rat race of a life, it must have been God’s way of able disease, I am thankful to God for this gift of life that I telling me to let go and focus on the things that really matter,” continue to enjoy. Everyday I wake up is a gift, a blessing. I try Fanny reflects. to give back to others and with my example, to inspire them to live life for the moment and live it to the full, no matter their “I figure that the remaining part of my time on earth should be circumstances…. invested not in material things like a big house but something more intangible yet fulfilling. I still have the gift of life that I Most important of all, find the time to be still. Once in a while, can use to extend a helping hand. I also still have the gift of time God wants us to be still so He can untangle the knot we are in.” to follow my heart and pursue what I am most passionate about which is traveling,” Fanny declares. I met Fanny when we became seatmates on the plane that was flying us back from a holiday cruise in the western MediterShe started doing volunteer work and devoting her time to ranean in June this year. We hit it off instantaneously. As worthwhile causes. On the side, she has also taken time to travel. the plane touched down, I knew that her story of courBoth activities have enabled her to cross paths with special people age needed to be told. SSO who became lifelong friends. All these times, her siblings have also rallied behind her, providing her varying levels of support. “The best things in life are the people we love, the places we’ve been and the memories we have made along the way,” philoso- Thank you, Fanny, for your gift of inspiration. Research Hamilton Scleroderma Group W ith a multidisciplinary group of dedicated clinicians, educators and researchers, the Hamilton Scleroderma Group are currently involved in education, clinical care and research in patients with systemic sclerosis. With the catalyst of increased resources they now have the potential to be more productive in advancing care through communication, education and clinically relevant research. Increased manpower will allow for increased educational activities with other medical and paramedical professionals. Furthermore, extra resources will allow for the more timely generation of preliminary data with which we can be competitive in nationDr. Maggie Larche took time to speak to Scleroderma patients after her al and international grant awarding bodies. Our mission is presentation at the Annual General Meeting in Mississauga. Dr. Larche gave an the advancement of care, through education and research, for overview of the newly formed Hamilton Scleroderma Group. patients with systemic sclerosis. Access to information With the assistance of an educator/nurse/ research assistant this initiative will provide a “first port of call” for patients or their relatives and for those calling in to the SSO for advice or information regarding SSc. This person will field telephone calls and provide advice or guidance relating to SSc, and will have backup from clinicians involved in the care of patients with SSc. There will also be a coordinator/educator/advocate who would play a pivotal role in coordinating patient care, entry into research studies, education of patients/physicians/allied health professionals, as well as coordinating sample procurement for research studies, administering Research Ethics Board applications and approvals. Education Unparalleled opportunity to establish outreach educational program in LHIN and primary care for improved diagnosis and clinical care of patients with systemic sclerosis. Opportunity to strengthen undergraduate and postgraduate education. raising the profile of this disease in the scientific and medical community. Opportunity to get local systemic sclerosis patients into clinical research studies. Research Drs. Mark and Maggie Larché , together with Dr. Haaland have initiated a project to determine whether certain “self ” proteins induce an immune response in patients with SSc. This study is based on published and ongoing investigations of transplantation rejection in collaboration with Dr Simon Ball at the University of Birmingham, UK. Dr. Larche accepted this cheque from the Scleroderma Society of Ontario on behalf of the Hamilton Scleroderma Group. Drs Kolb and Cox have a project determining the role of circulating fibroblast progenitor cells, called fibrocytes, in pulmonary fibrosis, and are gathering a cohort of patients with scleroderma lung disease. In collaboration with the Hamilton Centre for Kidney Research, Drs Kolb and Margetts are investigating the role of fibrocytes in patients with kidney involvement using similar research strategies to the pulmonary fibrosis study. Drs Margetts and Mark Larché are developing a mouse model of scleroderma by modifying an existing model of “sclerodermatous graft-versus-host disease”. The novel models developed in Hamilton will employ mice that are transgenic for human MHC molecules in order to re-create many features of human systemic sclerosis that occur as a result of the human incompatibility. This molecule will allow the pre-clinical evaluation of peptide-based vaccines for the treatment of scleroderma. SSO Education Is a Support Group for You? R ecently I had a call from a young mother newly diagnosed with a rare disease called Scleroderma. She went into great detail of her symptoms as if to deny the reality of the diagnoses. The story is heart wrenching, as many of us know, but to hear the fresh new features of her dilemma brings life into perspective. My own issues seem less significant. I am neither a medical professional nor a trained health care aid, but I am a proponent for Scleroderma patients and their families. Some people are afraid to look at the faces of Scleroderma, possibly visiting their own uncertain future, however, a support group can alleviate many fears. Many of our volunteer support group leaders are veterans in their own right. The knowledge they have accumulated on Scleroderma and its side effects are often extensive. Through the contact of many patients and their experiences, they are able to offer suggestions that may enhance the medical treatment already taking place. There are many options to explore such as biofeedback training, pure essential oils, hot wax, ultrasound treatments, warm water exercise, acupuncture, Jacuzzi bath, reflexology, massage, moisturizing lotions, balanced diet, meditation or prayer. Please confer with you doctor before trying any new therapies. There is no known cure, and many of these suggestions will not help everyone, but talking to someone who understands bring peace of mind to the new Scleroderma patient. I want to thank all the support group leaders for the role they play in reassuring and sharing with the patients in their community. When I think about support groups and the roles they play, I remember a saying by John Ruskin - “ Kind hearts are the garden Kind thoughts are the roots Kind words are the blossoms Kind deeds are the fruits Helpful Hints ” While the SSO does not endorse any of the products mentioned below, nor can we attest to their effectiveness, we are passing on this information as we think it may be of interest to you.. FOR TELANGIECTASIA (those annoying red spots, especially when on the face): Vichy Laboratories have a corrective foundation line, called Dermablend™. It comes in various formulations, from a heavy pancake-type makeup, or cover-up stick, to a liquid foundation which comes in a tube. This facial makeup is marketed to people with disfiguring birth marks, scars, or other anomalies that cannot be covered by normal cosmetic foundations. FOR DRY MOUTH: Wrigley’s Excel brand has a new chewing gum on the market in Canada, called Excel Mist. It is advertised as having “a hydrating sensation with microbursts™”. Also for dry mouth is a product available in the US at this time, called OraMoist™, Dry Mouth Patch. The ad states that “this is small patch adheres to the roof of the mouth then slowly dissolves, moisturizing for hours.” It can be purchased at Walgreens or Rite Aid in the USA. Here is the website information: www.OraMoist.com. FOR DRY NOSE: Try Secaris lubrication nasal gel. This quick acting gel is long lasting, moisturizes dry, crusty and stuffy noses. It is a non medicated, non addictive, water base gel that is compatible with oxygen therapy. SSO In Memoriam The Scleroderma Society of Ontario gratefully acknowledges the generous donations made from family and friends in loving memory of: Doreen Linn Jill Martin Maria Zseder Jackie O’Sullivan Rosemary Wadham Collette Hamilton Marilyn Tull Carmella Mattiacci Christina Donn Joyce Rice Mary Jane Chisholm Stefan Wira Frank Murphy Linda Hutchins Rita Lane Ron Wooddisse Al Kleber Public Awareness Past Events – Special Thanks! Castle Frank Elementary School, Kanata, ON The grade eight kids at the Castle Frank Elementary School held “A Night at the Oscars” and raised $1,633.00 which they donated to the Scleroderma Society of Ontario. SSO Executive Assistant Norma Augustine went to Kanata to meet the kids and receive their wonderful donation. May 31, 2010 – The Carpenter’s Union Annual Charity Golf Tournament The Carpenter’s Union Annual Charity Golf Tournament took place this year at Angus Glen Golf Course. The Carpenter’s Union made a generous contribution of $25,000.00 to the Scleroderma Society of Ontario from the proceeds of the tournament. Thanks to Claudio Mazzotto and everyone at the Carpenter’s Union for their support. J.J. Charity Golf Tournament and Fall Wine Charity Tour For the past 6 years, Dr. Brian Jafine and his brother have helped run the J.J. Charity Golf Tournament with a group of health care professionals. Each year one member of the committee gets to choose the charity that will benefit from the proceeds of the tournament. This year Dr. Jafine chose the SSO. His wife passed from scleroderma in 1994 after living with it for 14 years. The golf tournament raised $17,825.00. This group also held a Fall Wine Charity Tour and raised $2,000.00 which was just forwarded to the SSO. Many thanks to Dr. Jafine, his family and friends for making these generous contributions. Saturday September 5, 2010 – Lynn Brunelle ran her 4th half marathon (that is 21.1 km!) at Disney in California On September 5, 2010 in support of her mother Jeanette Brunelle.. Lynn and Jeanette raised $3,000.00 for Scleroderma Research. These ladies pay all their own expenses and all money raised is forwarded to the SSO. Thanks for all of your hard work and training Lynn. We will be watching you on January 8, 2011 and January 9, 2011, when you run the Goofy Challenge in Florida (see upcoming events below). Saturday September 25, 2010 The Second Annual SSO Golf Tournament The Second Annual SSO Golf Tournament was held at Knollwood Golf Club in Ancaster. 144 golfers participated in this event which raised over $25,000.00. Special thanks to Mike Rice and Jason Worron who, with the assistance of a dedicated golf committee, put together a first class golf tournament. Watch for the notices for next year. You will not want to miss it. Sunday September 26, 2010 - Scotiabank Toronto Waterfront Marathon Our team of 14 runners and walkers, including Dr. Mark Larche of the Hamilton Scleroderma Research Group, raised over $9,000.00. Thanks to all of those who came out and participated. It was a beautiful day to run around Toronto and raise a little awareness for Scleroderma. Again, watch for this event next year – it is super fun. SSO Winter - December 2010 Ontario Support Group Contacts (519)267-2597 EXECUTIVE BOARD Maureen Sauve President Catherine Buntain-Jeske Vice-President Barbara Williams Secretary Vidas Vapsva Treasurer Peter Woolcott (Retired) Past President Coordinator Ada Tutman [email protected] Belle River Kandy Kurkcuyan (519) 679-4115 Brantford Fran Wolff (519) 752-6648 [email protected] Cambridge Ada Tutman (519) 267-2597 [email protected] Haldimand Irene Goodale (905) 765-0818 [email protected] Halton John Littler (905) 849-8356 Hamilton Marilyn Pout (905) 648-1330 Kitchener Penny Pogson (519) 570-4930 London Bea Kiekens (519) 641-6275 [email protected] London Bill Birtch (519) 281-8143 [email protected] Midland/Orillia Jeannette Brunelle (705) 526-9869 [email protected] Mississauga Vidas Vapsva (905) 822-7868 [email protected] Niagara/St.Catharines Barry Toth (905) 646-8064 [email protected] Maria Colavecchia-Pfuetzner (lead) Brittany Stager (website) Irene Goodale (newsletter - AGM) Ada Tutman (newsletter-research, support groups) Ottawa Aline Laporte (613) 745-7829 [email protected] Fundraising & Corporate Relations Pembroke Ralph Bergsma (613) 735-3313 [email protected] Sarnia Susan Dunn (519) 541-1064 Scarborough Naana Daniels (905) 686-7265 Thunder Bay Rose Marie McCracken (807) 344-8345 Tillsonburg Julie Desplenter (519) 842-3451 [email protected] Toronto Maria Colavecchia 1-888-776-7776 [email protected] Toronto Kaarina Rennie 1-888-776-7776 [email protected] DIRECTORS Public Awareness Brittany Stager (lead) Mary Johnson Barbara Williams [email protected] Finance & Administration Vidas Vapsva (lead) Maureen Sauve Barbara Williams (membership) Education Cathy Buntain-Jeske (lead) Marlene Gibson Barry Toth [email protected] Research Maureen Sauve (lead); Darlene Mattiacci Mary Johnson; Cynthia Busch Government Relations Darlene Mattiacci (lead) Cathy Buntain-Jeske Administrative Support Executive Assistant Norma Augustine Scleroderma Society 0f Ontario (905)544-0343 SSO Toll Free 1-888-SSO-7SSO Arthritis Self-Management Program (416)979-7228 The Scleroderma Society of Ontario Web Page www.sclerodermaontario.ca Scleroderma Society of Canada Web Page www.scleroderma.ca Scleroderma Foundation Web Page www.scleroderma.org Advisors Medical Advisor London - Dr. Janet Pope Medical Advisor Hamilton - Dr. Elzbieta Kaminska Medical Advisor Toronto - Dr. Sindhu Johnson DISCLAIMER The Scleroderma Society of Ontario does not endorse any treatment, drug or diet reported in this newsletter. We wish only to keep you informed. Check any treatment with your doctor. For your convenience You can now easily check your membership renewal date by looking at your mailing label. We have recently moved to a common renewal date of April 1st each year, making it easier for us to track and for you to remember. We believe our records are accurate but if you feel there is any discrepancy please feel free to call Barbara Williams at 905-681-6017. SCLERODERMA SOCIETY OF ONTARIO 136 Kenilworth Ave. N. Hamilton, Ontario L8H 4R8 Phone (905) 544-0343, Toll-free 1-888-SSO-7SS0 (1-888-776-7776) Fax (905) 543-1909 www.sclerodermaontario.ca Membership Application / Renewal Form Annual Membership Fee: $25.00 Household Family Membership Fee: $35.00 Name: Address: Apt#: City: Postal Code: Prov. Phone: Email: Please make your cheque payable to the Scleroderma Society of Ontario Send to: Scleroderma Society of Ontario 136 Kenilworth Ave. N, Hamilton, ON L8H 4R8 1. Join: ❐ One Year ❐ Two Years ❐ Two Years 2. Renew: ❐ One Year 3. Give a Membership to: Donor’s Name: Amount Enclosed $ Date: I would be interested in helping with: ❐ Phoning committee in my area ❐ Newsletter committee ❐ Public relations committee ❐ Computer work ❐ Fundraising committee ❐ Slceroderma support group in my region ❐ Other
Similar documents
SSO 2014 - Winter Newsletter - Scleroderma Society Of Ontario
of the skin and can affect internal organs of the body. As many as 16,000 Canadians are estimated to be living with this painful and debilitating connective tissue disorder. It can strike at any ag...
More informationThe SclerodermaConnection - Scleroderma Society Of Ontario
Patient centered Intervention Network (SPIN), an international team of researchers, clinicians, scleroderma patients, and patient advocates devoted to developing and implementing patient centered c...
More information