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2012 Mastocytosis Society Canada President's Annual Report

It has been my extreme pleasure to serve as the President of Mastocytosis Society Canada (MSC) for the past 10 months. Very quickly, I learned two key things about this organization. First, the business side of MSC is in good order with leaders who have strong business sense and who pay appropriate attention to strategic and financial detail. Secondly, these same leaders and volunteers work tirelessly to ensure appropriate information and support is available to mast cell disease patients across Canada. Taking on the Presidency has been seamless thanks to the diligence of our Directors and the incredible organization of our Secretary, Stephen Monty. With such leadership in place, MSC is truly set up for success. As with many non-profit organizations, we have had some changes in leadership at MSC in 2012.
  • Carrie D'Arville (co-founder of MSC) stepped down as President after much hard work to establish the organization and put in place all the governance that goes with it. Carrie remains a Director with MSC and is focused on patient support and managing our digital presence. Shawna Lechner-Rumpel was elected President in January 2012.

  • Michael Pinnock stepped down as Treasurer of MSC. Michael was instrumental in guiding the financial side of MSC and was key in assisting with the 2010 and 2011 audits. We thank Michael for his support of MSC over the years and wish him well with his new ventures. Darren Rumpel was appointed Treasurer in April 2012.

  • Harlon Davey stepped down as Director of MSC after serving close to one year on the Board of Directors. David Weinstein took over the Directorship for several months but has decided not to put his name forward as a permanent replacement. MSC would like to thank Harlon and David for their time and dedication to our cause. Currently, this Director position is vacant and we are actively seeking a suitable candidate to fill it.
Key 2012 Initiatives

It has been a busy but productive year for MSC. Outlined below are several of the key initiatives we have been working on in 2012.
  • International Patient Survey - Early in the year, MSC (with the help of Dr. Sibbald and Dr. Alavi) sponsored a patient survey to help better understand the symptoms, triggers, diagnosis and treatment of mast cell disorders. We are working to have the results of the patient survey published in medical journals across Canada (and globally).

  • Information Pamphlet - MSC published an information pamphlet that covers general information on Mastocytosis and Mast Cell Activation Syndrome. It outlines symptoms, triggers and helps patients understand next steps. These pamphlets were mailed to key physicians throughout Canada to help educate them and their patients on mast cell disease. The pamphlet is posted on our website at mastocytosis.ca and is also available by contacting Shawna Lechner-Rumpel (contact info is on the website).

  • MedicAlert Engraving - Every patient is strongly encouraged to wear a MedicAlert bracelet to notify medical professionals of their rare condition. MSC worked closely with Dr. Sibbald and MedicAlert to standardize the engraved wording on the bracelet to ensure mast cell patients receive the best care possible in an emergency situation. The standardized wording is published on our mastocytosis.ca website in the Patient section.

  • Fundraiser at Luxton School - MSC was the beneficiary of a significant fundraiser held at Luxton School in Winnipeg. Delina Rissin, our National Pediatric & Parent Support Leader, organized an art auction to raise money to help educate parents and caregivers of children with mast cell disease. The creation of this information package will be a key focus area for MSC in 2013.

  • Charitable Application - MSC is very interested in acquiring Registered Charity status and has been working hard to put together the appropriate information for the application. We are getting very close to completion and hope to have the application filed by the end of 2012.

  • mastocytosis.ca Website - A key focus for MSC has been to have complete information about mast cell disorders represented on our website. Carrie D'Arville has been working tirelessly to write and post all of the information and we are very close to having this completed. Carrie has also established a Twitter presence for MSC and is actively tweeting relevant information.

  • Patient Support Forum - The support forum is a key component of the patient support MSC provides. Patients are encouraged to post information about their own conditions and post helpful comments for others where appropriate. The forum is alive and well and we are seeing an increasing number of patients helping each other.

  • Partnerships and Memberships - MSC continues to look for strategic partnerships to help elevate our exposure and ensure patients are aware of the support we offer. We have forged partnerships with The Canadian Organization for Rare Disorders (CORD), The Quebec Coalition of Orphan Diseases (RQMO) and Orphanet (Europe Rare Diseases portal).

  • Patient Support - Throughout the year, patients contact us with a variety of questions and situations. Some have been recently diagnosed and wonder about next steps. Some remain undiagnosed and wonder about which doctor to see. Others are in crisis situations and need emergency care. MSC volunteers work hard to help these patients find experienced doctors in their area and ensure they have the appropriate information to manage their health.
We are very pleased with our accomplishments this year and would like to say thank you to all of our Directors, officers and volunteers across Canada who have contributed to our great success. But we are not done yet ... we have great things planned for 2013.

Key Focus Areas for 2013
  • Charitable Status - We will continue our quest to achieve charitable status in 2013.

  • Medical Advisory Committee - Dr. Sibbald is the current chair of our Medical Advisory Committee, strongly supported by Dr. Alavi. In 2013, we would like to concentrate on increasing the number of medical advisors on the committee to assist with research, emergency and treatment protocols, communication and patient support.

  • Physician Survey - MSC would like to conduct a physician survey in 2013, similar to the patient survey that was done in 2012. Our hope is that we can gather more information on the diagnosis and treatment of patients from physicians who have experience with mast cell disease.

  • Webinars - As part of our mission to educate, MSC would like to conduct webinars to help educate physicians and patients across Canada. This is an excellent way to receive relevant information from health care professionals from the comfort of your own home.

  • Information Package for Caregivers - As mentioned above, MSC will work with Delina Rissin to put together an information package for parents and caregivers of children with mast cell disease. This information will help parents ensure their children are safe when they are at school or engaged in other activities.

  • Fundraising and Memberships - MSC will need funding to accomplish all of the initiatives we've set out for 2013. We will actively look for opportunities to do more fundraising and welcome any fundraising ideas or initiatives from our members. We will also continue to actively promote the benefits of MSC membership to patients and caregivers across Canada.
Closing Remarks

To the MSC board and officials, I would like to say a very special thank you for making my transition to this amazing organization as seamless as possible. Together we have done great things in 2012 and I look very forward to more incredible things to come in 2013.

To the MSC membership, thank you so much for your encouragement and support as we work to serve you better. If you have any thoughts, comments or even concerns, please feel free to share them with me. I'm always interested in ideas that will help make MSC more useful and effective. I can be reached at shawna.lechner@sasktel.net or by phone at (306) 789-9800.

Congratulations to everyone on a very successful year and I look forward to working together in the future!

Sincerely,

Shawna Lechner-Rumpel, President
Mastocytosis Society Canada

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