June 2009

Physician and Patient Awareness

Late in 2008 we told you about our plans to launch the biggest awareness campaign in our history. Recently we mailed physician brochures, posters and a supply of patient brochures to every family physician, respirologist, hepatologist and medical geneticist in Canada. English and French versions of all materials were sent where appropriate.

GlaxoSmithKline and Talecris Biotherapeutics contributed a combination of funding and services to create these materials, translate, print, package and mail them. We are very thankful to these two companies not only for making this long planned project possible, but also for recognizing the importance of increasing awareness of alpha-1 antitrypsin deficiency in Canada. We believe that this national exposure to the medical community will stimulate testing, diagnosis and early detection and treatment.

So far there is a buzz about the materials with doctors and patients calling and e-mailing us about them. Let's build on the momentum, the next time you visit your physician please ask if they received their package, look for the poster and brochures in the reception area, let your doctor know we can replenish their supply, ask for their comments and contact us with their feedback and yours. It’s always helpful to provide our funders with evaluation comments and success stories.

Extra copies are available to distribute to your families for the asking.

Alpha-1 Canada Annual General Meeting

Alpha-1 Canada's Annual General Meeting (AGM) was held on June 15th, 2009. The Annual General Meeting (AGM) is an opportunity for members of our community to meet and interact with each other and the board of directors, find out what is planned for the coming year and offer suggestions and make comments on programs and services.

Holding the meeting in a brick and mortar location means that only Alphas who live nearby can attend. This year we took a page from our Drop-in Meeting book and held the AGM by teleconference. This meant that Alphas from coast to coast were able to attend and be part of the meeting.

There was a short "business" part of the meeting where the board took care of certain legal requirements like approving the financial statements and appointing an auditing firm for the coming year. The business portion of the meeting was first on the agenda, followed by an open forum and question and answer session.

There were a number of suggestions put forward and we are looking into the feasibility of all of them. Watch future newsletters for more details.

We are always open to your comments and suggestions. You don't have to wait for the next AGM to let us know what you think.

Nicole Massicotte (Québec) and Patricia Taylor (Ontario) retired from the board and Patricia (Patti) Beek (New Brunswick), Sharon Gow-Meawasige (Ontario) and Joanne Wicker (Alberta) joined the board. To learn more about these new board members read page 5 and 6 of the Report from the Board of Directors.

Three reports were presented and are available for viewing by clicking the following titles: President and Chair's Message, Report from the Board of Directors, Report from the Executive Director.

Parlez-vous français?

Not only do we now have brochures available in French and English. We are also very close to completion of a French version of our website. Soon, there will be two versions of our website, English and French.

The number of known diagnosed Alphas in Québec is very low and most experts agree that the reason is not that French Canadians are less likely to have Alpha-1, but rather that little information is available in French. Our new French language website should change that.

Alpha-1 Association (US) Conference

In early June the American Alpha-1 Association held its annual education conference in San Francisco. The annual conference brings together Alphas and their families from across the US to share in a weekend of educational programs given by national experts and leaders in the field of Alpha-1 and other areas such as health, nutrition, emotional support, and public policy.

Recordings of the sessions and the handout materials will soon be available on the Alpha-1 Association's website under E-education. Recordings of the sessions and the handout materials from the 2008 conference can be found here.

Next year the conference will be held in Orlando, Florida in early June, Canadians are welcome to attend.

Note: News items, links to the web sites of pharmaceutical companies and other organizations are provided for your information and convenience only and do not constitute or imply their endorsement, recommendation or favouring by Alpha-1 Canada.

Alpha-1 Canada - Making a difference in the lives of Alphas