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May 2014 Mastocytosis Society Canada Newsletter

Greetings from MSC! Spring is arriving all across Canada and everyone is excited at the possibility of taking on new projects. MSC is no different. We have some exciting news to share so thought it was timely to update you on a few things we're working on.

What are we doing?

MSC is now a registered charity! - Effective January 2014, our application for charitable status was approved and we are now a registered Canadian charity. This is wonderful news for many reasons, but most notably that:
  • We will now be able to issue tax receipts for donations made to our organization. We have many generous individuals who donate money to MSC every year, and now their donations can be formally recognized with a donation receipt.

  • We may now qualify for grants from private foundations, governments and other agencies. This opens up the possibility for us to receive funding to help accomplish the many initiatives we have on our work plan.

  • Among many other benefits, it also helps us financially by not having to pay income tax and allows us to be eligible for GST/HST rebates.
MSC is very thankful to be a Canadian charity and will continue to work hard to support those patients with Mastocytosis and other mast cell diseases. Here are some of the initiatives we have underway to help support our goals.

Staying current with mast cell research - More and more physicians throughout the world are becoming familiar with mast cell disease and this is resulting in more emphasis on research. As an organization dedicated to patient support, it is important for MSC to remain current on all research related to mast cell disease, determine what is applicable to our patients, and communicate this research through whatever means possible (i.e. newsletters, website, forum, webinars).

Getting more physicians on board - MSC is also seeking to establish a Medical Advisory Committee, which is a panel of physicians familiar with mast cell disease willing to assist with education, communication and support of patients and physicians across Canada. MSC has had many stops and starts when it comes to establishing a Medical Advisory Committee, however we now feel confident we have the right approach to making this happen.

If you have a doctor who is very well versed in Mastocytosis or Mast Cell Activation Syndrome (MCAS), please send an email to info@mastocytosis.ca. MSC will keep a list of these physicians for future reference and to help patients seeking support. MSC receives at least 10 emails per week from patients who are looking for a knowledgeable physician in their city/province. Patients are so thankful when we are able to provide them the name of a doctor in their own neighbourhood who might be able to help.

How can you help?

MSC is a very small organization with very big plans! We can always use help and you might be just the right person to provide it.
  • Renew your membership - MSC memberships are $25 per year and allow you to choose the leadership and help set the priorities of the organization. Help support us today by becoming a member. Payment may be made through PayPal at www.mastocytosis.ca or by sending a cheque to 4305 Preston Crescent - Regina, SK - S4X 0C9.

  • Make a donation - Your donation to MSC will help fund the many activities we have planned including the creation of an information package for parents of children with mast cell disease. This information package will help caregivers (i.e. daycare, school, babysitter) understand the special needs of the child and how to keep them safe.

  • Volunteer your time - If you are interested in donating your time to MSC, please reach out to us. Right now we are looking for volunteers to help with the following:

  • o Board Member - MSC currently has four great board members, but we require a fifth to complete our contingent. If you or someone you know is willing to roll up their sleeves and get on board, then please reach out to Shawna at the email address listed below. We'd love to have you!

    o On-Line Forum Moderator - MSC has a large membership that communicates via our on-line forum. These conversations are very helpful to newly diagnosed patients, undiagnosed patients, and those of us that are just trying to cope. Please log-in to the forum and keep the conversation flowing. Someone out there needs you!! If you are not a member of the forum but would like to be, please send an email to info@mastocytosis.ca.

    o Website Designer/Creator - In the next few months, MSC will undertake a redesign of the www.mastocytosis.ca website. If you or someone you know has great design and content organization skills, please send them our way.

    o Medical Advisory Committee Liaison - This position will act as a liaison between the Board of Directors and the Medical Advisory Committee (once established). We will look to this individual to organize meetings, take minutes, take action on initiatives and bring information back to the Board of Directors. If you are interested in learning more about this position, please contact Michael at meeko1949@gmail.com.

    o Research Coordinator - As mentioned above, MSC is looking for an individual to help us stay current with all of the research being done on mast cell disorders. Again, if you have questions or are interested, please contact Michael at the above email address.

    I would like to thank you all 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 info@mastocytosis.ca or by phone at (306) 789-9800.


    Warmly,

    Shawna Lechner-Rumpel
    President - Mastocytosis Society Canada (MSC)

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