Michigan Chapter at National Conference
The 2010 Scleroderma Foundation National Patient Education Conference was held July 30 to August 1 in Boston, Massachusetts and the theme this year was, “Where Revolutionary Ideas Begin.” The weekend began with a leadership conference on Friday for Executive Directors, Chapter Presidents and Board of Directors. Robert Riggs, the Scleroderma Foundation’s CEO presented the State of Foundation and he and the National Board of Directors updated all Chapter leaders on the strategic plans of the Foundation.
Friday evening in the Constitution Ballroom of the Sheraton Boston Hotel the Opening Reception for the 2010 National Patient Education Conference was held from 6:00 p.m. to 8:00 p.m. This year’s event was sold out and there were over 600 patients, family members, caregivers, physicians and staff members in attendance!
Saturday morning keynote speaker, Dame Carol M. Black, the Director of the UCL Centre for Rheumatology and Connective Tissue Disease, held the attention of a standing room only group as she spoke about her work in the field of scleroderma. Dame Carol is also the National Director for Health and Work, Chairman of the Nuffield Trust and has just finished her term as Chairman of the Academy of Medical Royal Colleges. She is the immediate past President of the Royal College of Physicians.
All day Saturday conference participates were able to choose which workshop they attended and topics ranged from, “Nutritional Needs for Scleroderma,” “Physical Therapy Benefits”, “Navigating the Emergency Room” to ‘Issues Young Adults Face.”
 In the evening, a Cocktail Reception was held before the Awards Banquet. This year the Michigan Chapter was honored twice at the banquet. First, scleroderma patient and Cadillac, MI resident, Judy Nichols was honored as the 2010 recipient of the, Scleroderma Foundation Messenger of Hope Award. Judy has done so much for not only the Michigan Chapter but also for the scleroderma community at large. In 2009 she and her husband traveled to Washington, DC with Executive Director Laura Dyas and successfully lobbied for the H.R. 2408 and the S. 1545, Scleroderma Awareness Bills. Judy also produced a DVD entitled, “Living with Scleroderma with a Smile”. This DVD is being used at all the Patient Education Days in Michigan to help motivate scleroderma patients and family members and to help show that having scleroderma does not define one, but it simply adds something to one’s life. To anyone who has had the opportunity to meet Judy it is evident that her positive nature can inspire and motivate those around her. When scleroderma caused her to walk away from her teaching career, make drastic changes to her family life and personal life she choose to be positive rather than negative and use those changes to enhance her life. She educates everyone around her about scleroderma and shares updates about the Michigan Chapter on her personal blog and on Facebook to her over 1,100 friends, many who are previous students she has helped reach their life goals.
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Dr. Maureen Mayes and Judy Nichols
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| Joan Provizer, Laura Dyas, and Judy Nichols |
The second scleroderma patient from Michigan to receive an award was Joan Provizer, Board of Director member and past Development Consultant for the Michigan Chapter. Joan has served the Michigan Chapter since 1988 when she joined the Board of Directors back when the Chapter was known as the United Scleroderma Foundation. Under Joan’s guidance the Chapter grew membership, held numerous educational meetings, fund raisers and galas. Her dedication and perseverance over the years has enabled the Chapter to make additional research contributions to the National Scleroderma Foundation as well as host the National Patient Education Conference in 1993. Joan received the prestigious Founders Award on Saturday evening and the complimentary remarks from CEO, Robert Riggs were testament to the insurmountable amount of lives she has touched over the years.
The Conference ended on Sunday afternoon after morning workshops were concluded and after the keynote closing presentation from Stephen I. Katz, M.D., PhD. Dr. Katz has been the Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases since August 1995 and is also a Senior Investigator in the Dermatology Branch of the National Cancer Institute. He spoke on “Updates in Scleroderma Research.” Dr. Katx has focused his studies on immunology and the skin. His research has demonstrated that skin is an important component of the immune system both in its normal function and as a target in immunologically-medicated disease.
During the conference a Scleroderma Family Registry and DNA Repository was made available through the University of Texas. This NIH/NIAMS funded study has enrolled over 1300 scleroderma patients to date. Thanks to these samples, the Registry has made strong associations with a small group of genes and are in the process of publishing the results. The next step for their research involves the performance of a genome wide scan. The Registry currently does not have enough samples to complete this scan and thus, are appealing to those patients not currently in the Registry to join. The registry needs individuals diagnosed with systemic forms of scleroderma and friends without any autoimmune disease to serve as healthy controls, age-matched to patient donors. They have a critical need for participants in this category.
Conference participants were very excited to learn that the 2011 Conference will be held on July 22-24 in San Francisco. The Michigan Chapter recommends that you place this date on your calendar now and that you make plans to attend the National Patient Education Conference. This is a time you can receive updated information about scleroderma, network with other scleroderma patients, family members and caregivers and find new ways to join together with others in an effort to reach out and find a cure. Take the first step today and mark the date on your calendar. The Michigan Chapter has set a goal of 50 attendees from our state. Help us reach that goal and join us in San Francisco. |
