May 2009

Alpha-1 Canada Annual General Meeting

Every year Alpha-1 Canada holds a general meeting. The Annual General Meeting (AGM) is an opportunity for members of our community to meet and interact with the board of directors, find out what is planned for the coming year and offer suggestions and make comments on programs and services. There is also a short "business" part of the meeting where the board takes 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 will be first on the agenda and take up 15 to 20 minutes, followed by an open forum and Q and A.

Holding the meeting in a brick and mortar location means that only Alphas who live nearby can attend. This year we are taking a page from our Drop-in Meeting book and holding the AGM by teleconference. This means Alphas from coast to coast can call a toll free telephone number and be part of the meeting. Everyone is cordially invited to attend.

This year's AGM teleconference will be June 15th at the following times:

4:00 pm Pacific Time	7:00 pm Eastern Time
5:00 pm Mountain Time	8:00 pm Atlantic Time
6:00 pm Central Time	8:30 pm Newfoundland Time

Please join us for this important event. For details on how to call in please contact Jim Mundy at jim.mundy@alpha1canada.ca or 1-888-669-4583.

CORD Conference and Day of Action in Ottawa a capital success

Bill Laughlin, Aplastic Anemia and Myelo-dysplasia Association of Canada, Virginia Butler, Wegener's Granulo-matosis Support Group of Canada and Jim Mundy, Alpha-1 Canada

On April 30th, the Canadian Organization for Rare Disorders (CORD) held a Day of Action on Parliament Hill in advance of their annual conference on May 1st and 2nd.

Dr. Ken Chapman and Dr. Diane Cox who both spoke at the conference, as well, Ana Bradi from the Canadian Alpha-1 Research Registry and Alpha-1 Canada’s Executive Director, Jim Mundy represented the Alpha-1 Community.

On the Day of Action ten teams of three to four representatives of rare disorder groups fanned out across Parliament Hill to prearranged meetings with MPs and government officials. Although there are many issues of interest to the rare disease community, the teams focused their persuasive powers on gaining support for a Canadian Orphan Drug Policy including a definition of 1 in 2,000 Canadians as rare; support for research into discovering new treatments; and strengthening Canada’s leadership in health care.

While the Day of Action did not result in any promises for concrete action, it did increase awareness among politicians of the issues facing the rare disease community and commitments for small steps toward our ultimate goals.

The conference which followed the Day of Action, featured well known and thoughtful physicians, patients, researchers, lawyers and caregivers who shared their views on and experiences with rare disorders. There were three sessions on Alpha-1.

Sharing what works with other Alphas

Everyone knows that exercise is good for them. When you have lung disease exercise is especially good for you but at the same time that much harder to accomplish. The Lung Association's slogan, "When you can't breathe, nothing else matters," couldn't be truer. But no matter how difficult it may seem to be getting exercise, it is just as important as taking your prescriptions.

Exercise is essential for Alphas It is now recognized that people with lung disease derive significant mental and physical benefits from exercise. Routine exercise improves mental outlook, stamina, and physical well being.

Teryle Read, an Alpha from Vancouver Island, has some great advice she has agreed to share. Teryle isn't a doctor or a respiratory therapist, she is an Alpha who has graciously agreed to share her down-to-earth advice with the Alpha-1 Canada Community. Teryle has written a series of articles for the Alpha-1 Canada Community News and below you will find the first in that series including an easy exercise complete with Teryle's own diagram.

This is the place where we have to say, please consult your physician or healthcare provider before beginning any exercise regimen.

Teryle's down to earth advice

There is much said about illness bringing on isolation. How sad. Unfortunately the same isolation happens with aging and poverty. Having just one of those components can be devastating so how do we avoid the isolation and perhaps depression that often walk hand in hand? For starters, if you are reading this you have an excellent source of communication. Learn how to navigate to stay in touch with those who are not close by. Connect to sites on the web where others offer support in an open forum. Make friends with your neighbours. Of course it means putting yourself out there, making the first move.

A few times I have been out at some gathering when somebody comments on my oxygen and how they have an aunt, for example, who never goes out. Well, it does take effort to get up and get going and get out of the house, particularly on days when you don’t feel up to it. The alternative? - Isolation. The effort becomes greater as lung disease progresses and that is why it cannot be stressed enough that we must keep up our strength and our respiratory muscles. We eat healthy foods, we take our medication, take our supplements, stay away from ill people, all to stay healthy. But in spite of all of that if we don’t exercise we will eventually become so breathless and weak we either can’t or won’t go out in public. So we arrive back at isolation and perhaps depression.

The best thing I did for myself was to move to Vancouver Island. Initially it was to be closer to my grandchildren and get away from the increasing smog of the big city. I had to leave my friends of many years but now they have a reason to come to the island, and they do. Here I knew one person with Alpha 1, who in turn introduced me to others with lung disease.  We have a small Island Alpha group now and we keep in touch, as well as meet for lunch, for laughs, hugs, updates on family, transplants and sometimes loss.

I believe there is a scientific truth that people who exercise have less depression than those who do not. If you have high blood pressure, exercise. Today I have to work very hard at my peak part of the day/evening to get the endorphin rush but now 30 minutes of moderate exercise will do. 

Try this yoga exercise for stomach muscles: because it may be difficult to do the typical crunches or sit ups of our larger muscles. It may be impossible to breath while working through a difficult ab exercise so I feel this is one of the simplest ways to begin.  Bend at the hips with hands on hips. Purse lipped blow all the air out of your lungs then SUCK your belly button in, in, in, right back to your spine.  It takes practice but it gives your tummy good tone, good for belly breathing as you need it.

Teryle will have more advice to share in the June edition of the Alpha-1 Canada Community News and we thank her for her efforts and sound advice.

If you have news, suggestions or advice like Teryle's that you wish to share contact Jim Mundy at jim.mundy@alpha1canada.ca or at 1-888-669-2583. We encourage everyone to be involved.

Getting the word out

You may recall that a few months ago we told you about a mailing we will be doing to all family physicians, respirologists and hepatologists in Canada. Each mailing package will contain a brochure about Alpha-1 specifically targeted toward physicians, a waiting room poster and 20 brochures specifically targeted toward patients.

All of the materials have been printed and will be hitting the mail shortly. When we know exactly when the mailing will go out we will let you know so you can ask your doctor if she or he received them and let us know if the posters are displayed in their waiting rooms.

This project is being generously supported by GlaxoSmithKline and Talecris Biotherapeutics.

Gene Therapy for Alpha-1?

Applied Genetic Technologies Corporation, AGTC, a privately held clinical stage biotechnology company developing novel human therapeutics, announced that the Company has closed on an $11.8 million financing round to be used by AGTC to complete the next phase in human clinical trials for its gene therapy treatments for Alpha-1 and Leber’s Congenital Amaurosis (LCA) a form of childhood blindness, and preclinical development of gene therapy treatment for Achromatopsia, a form of daytime blindness.

Researchers may have discovered why some babies with Alpha-1 experience severe liver disease while others do not

Simply having the defective Alpha-1 gene does not seem to determine whether an individual becomes ill. Researchers have always believed that there might be other genes or other factors that, when present, determine if and how Alphas become sick.

Researchers at Baylor College of Medicine and the University of Florida have discovered a single change in the genetic code for a checkpoint enzyme reduces its activity in the cell and results in rapid and early liver failure in children born with Alpha-1 that can cause liver failure in infants, children, and adults.

People born with a defective gene for alpha-1 antitrypsin do not make a form of the protein that can protect the lungs because it is inappropriately retained in the liver. Some people with the deficiency also have liver disease, but the age at which it occurs varies. In this study, Dr. Richard Sifers, associate professor of pathology at BCM, and his colleagues, identify a particular mutation in the gene for a checkpoint enzyme called ER mannosidase I. This mutation leads to early liver failure, and without a transplant, many such infants die.

In this case, infants who develop this serious liver disease have had two unlucky genetic mishaps. They are born with a defective alpha-1 antitrypsin gene and a defect in the mannosidase gene as well.

Funding for this work came from the National Institutes of Health and the Alpha-1 Foundation.

Read more about this research.

Leaders in Health and Genetics Acknowledged by Genetic Alliance Awards

Genetic Alliance, a non-profit health advocacy organization, announced that Joseph D. McInerney, Frank Lehmann-Horn, Gautam Naik, and Talecris Biotherapeutics will be honoured for their contributions to the genetics community at the 2009 Genetic Alliance Awards Banquet on July 18, 2009.

With a network of more than 10,000 organizations, Genetic Alliance brings together parent and family groups, community organizations, professional societies, corporations and government agencies to transform health systems through improved access to information, research and services.

The Art of Industry Partnership Award will recognize Talecris Biotherapeutics for supporting creative partnerships in advancing the understanding and treatment of genetic conditions, disorders and diseases. Talecris Biotherapeutics, Inc. is a global biotherapeutics company that discovers, develops and manufactures critical care treatments for people with life-threatening disorders in a variety of therapeutic areas. Their 17-year partnership with the Alpha-1 community is a hallmark of the Talecris commitment to advocacy organizations. The company helped create the world's largest Alpha-1 research registry and supported the development of educational materials, while offering grants to Alpha-1 groups and awareness campaigns in North America and Europe.

Alpha-1 Canada - Improving the Lives of Alphas

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