July 30, 2008

New Executive Director

Hi, my name is Jim Mundy and I'm the 'new' Executive Director of Alpha-1 Canada. I am very excited about working with the Board of Directors, the Medical Advisory Board and you, the Alpha-1 Community, to do what it says at the top of this page: provide support and information for Alpha-1 Antitrypsin Deficiency (A1AD).

These are exciting times at Alpha-1 Canada.

• The Medical Advisory Board is off to a running start and eager to do what they can to advance our mission. You can read details on the background of these leading health care professionals here. 
• There are new members on the Board of Directors who are just as committed to the Alpha-1 Community as the existing ones are. A list of our Board of Directors and their contact information can be found here.
• We have this new web site which we are updating regularly so that we can provide you with the information you need and want.
• We are planning an innovative and exciting event for September.
• And, finally we have this new monthly newsletter.

As I said, all of this is exciting, but it won't be as much as it can be without you. Providing support and information is helpful, but that support and information needs to be responsive to the Alpha-1 Community and that's where you come in. Please contact me directly with issues and concerns you may have. I want to hear from you.

• Tell me what you like about the web site and what else you'd like to see here.
• Are there issues we aren't addressing that you think we should be?
• Perhaps there are issues specific to where you live that we could help resolve.
• Maybe you are having successes or problems with treatment that others could learn from.

You are an important member of the Alpha-1 Community, your input will help us help you and others facing similar issues.

The plan for the newsletter, at least until we get some feedback from you, is

• to introduce and highlight members of the Canadian Alpha-1 Community
• to keep you informed about the work Alpha-1 Canada is doing on your behalf
• to keep you up-to-date on advances in research and treatment
• and to develop a sense of community from coast to coast

So...without further adieu...welcome to the "New" Alpha-1 Canada Community News.

Message from the President

Please join us in welcoming Jim to our organization and the Alpha-1 Community. He brings with him a wide range of experience and compassion. There is more information about Jim here.

The Board of Directors is enthusiastic about working with Jim, and you, to grow the organization and advance our cause.

Please help us help YOU by contacting Jim.

We remain steadfast in our mission as the organization grows. Recent research suggests that between 8,000 and 10,000 Canadians have A1AD, yet fewer than 300 are a part of the Alpha-1 Canada Family. One of our many challenges is to find Alphas. Educating health care professionals is one of the ways that we are able to increase the number of people properly diagnosed. For example, you will read below about educational sessions we are hosting for medical students, physicians and other health care providers, however, we need your help. Please encourage other Alphas to visit our web site and contact us.

Together, we can make a difference in the lives of Alphas! 

Mimi McPhedran

Sharon’s Extreme Medical Adventure

Sharon Gow-Meawasige, an active member of the Alpha-1 Canada community in Ontario received a new pair of lungs recently.

One of the lucky ones, Sharon had barely gotten settled in Toronto to begin her wait for "the call" when she got the call! Sharon is doing well and we will keep you posted on her journey.

Alpha's in the news

Margaret Flynn

The Nanaimo Daily News recently carried a story about Margaret Flynn who is waiting for a lung transplant.

Like Sharon, Margaret is also active in the BC Alpha-1 Community. 

Read the article about Margaret here.

Mark Pettigrew

On July 21st, CITY TV (CP24) in Toronto did a health piece featuring Mark Pettigrew, an Alpha-1 patient, the chair of our Medical Advisory Board, Dr. Kenneth Chapman and Complete Health Care, a company that supplies oxygen to Alphas in the Toronto area.

CP24 is not widely available outside of the Toronto area and we are trying to find a copy of the show to make available for viewing. Stay tuned.

Alpha-1 Canada teams up with Northern Ontario School of Medicine for educational events

On Tuesday, September 30, 2008, Alpha-1 Canada and the Northern Ontario School of Medicine (NOSM) will present three educational events in Sudbury, Ontario at the Northern Ontario School of Medicine.

All three events will feature Dr. Kenneth R. Chapman. Airway Specialist with the Asthma and Airway Centre of the University Health Network, Toronto Western Hospital, Researcher and Chair of our Medical Advisory Board.

The first presentation is entitled, “COPD and the Special Case of Alpha-1 Antitrypsin Deficiency: How We’ve Missed the Opportunity to Save Lives.” The target audience for this presentation is medical students and health care professionals and it will be from 12:00 p.m. to 1:30 p.m.

The second presentation is entitled, “Living with COPD.” The target audience for this presentation is patients and the general public and it will be from 3:00 p.m. to 4:00 p.m.

Both of these presentations will be held at NOSM East Campus in Sudbury and video-linked to NOSM West Campus in Thunder Bay and through the Ontario Telemedicine Network (OTN). We will provide the details on how to participate over the internet and how to watch a recording of the events afterward in next month’s newsletter.

The third presentation is entitled, “The Changing Face of COPD.” The target audience is physicians and it will be held off-campus from 6:00 p.m. to 9:00 p.m.

NOSM has been very helpful in organizing these events and we are thankful for their participation in our efforts to educate and inform health care providers, patients and the general public about A1AD.

Alpha-1 proteinase inhibitor for inhalation

The European Commission has granted orphan drug designation to Talecris' alpha-1 proteinase inhibitor (human) for inhalation use following an opinion of the Committee for Orphan Medicinal Products (COMP).

Currently, there are no approved aerosolized treatments available for augmentation therapy for A1AD. By providing incentives to the pharmaceutical industry, the European Union legislative framework for orphan medicines encourages the development of products intended for the diagnosis, prevention or treatment of life threatening or chronically debilitating conditions impacting no more than 5 in 10,000 people in the European Union.

The initiative, similar to provisions in the United States, but not Canada, helps to give patients suffering from rare diseases access to the same quality of treatment as other patients. Through this designation, the European Medicines Agency (EMEA) will provide to Talecris ten years of market exclusivity if the product is the first of its kind to be approved for marketing in the European Union. In addition, under this designation, EMEA will provide Talecris with clinical development assistance and reduced regulatory fees.

Talecris intends to seek orphan drug designation in the US. Larry Stern, chief executive officer of Talecris Biotherapeutics, said, "The European Commission's designation provides another promising development milestone for Talecris in the expansion of our alpha-1 franchise - a pursuit that reflects our ongoing commitment to offer clinical advancements that will benefit patients."

An important part of this A1AD aerosol development program is the exclusive partnership between Talecris and Activaero Technologies, an industry leader in controlled breathing technologies for inhaled therapeutic agents, for its AKITA2(R) APIXNEB inhalation system. This system has demonstrated consistently high drug deposition to the central and peripheral regions of the lungs in patients with A1AD independent of disease severity.

For more information on Talecris Research and Development programs, please visit their web site.

Next month

In next month's issue expect

• more news on Sharon's extreme medical adventure
• an update on flying with oxygen
• more details about attending the Sudbury educational events without leaving your home

We look forward to hearing from you. Don't forget our toll free number: 1-888-669-4583.