US Alpha-1 Association to hold education day in Ann Arbor, Michigan

In a previous newsletter we promised to provide details of education days held by the US Alpha-1 Association in cities close to the border. On Saturday November 14, 2009, they are holding a free patient education day in Ann Arbor Michigan, Ann Arbor is only 70km from Windsor, 150km from Chatham, 260km from London and 450km from Toronto.

The free program starts at 9:00 am and runs until 5:00 pm, although for those wanting to make a weekend of it there is a complimentary dinner on Friday night at 7:30 pm.

A copy of the program can be found on their website at www.alpha1.org/education/documents/AnnArborInvitation-Association.pdf

The education day will be held at Weber’s Inn, 3050 Jackson Road, Ann Arbor, MI  48103 where they have negotiated a US$99 room rate.

If you are interested in attending, you must register by November 6^th, 2009, although to receive the special hotel rate you must book with the hotel by October 14, 2009.

To register for the education day visit the Alpha-1 Association’s website at www.alpha1.org/education/AnnArbor.php or call 1-800-521-3025.

To make hotel reservations contact Weber's Inn at 1-800-443-3050. The group rate is US$99 plus tax. Reservations must be made by October 14, 2009 to guarantee that rate. The booking code is Alpha-1 Association or Alpha111309.

There is a group from Windsor planning on attending and we would be glad to see more of you there.

The US association is planning a similar event in Seattle, Washington in 2010. Once the details are available we will let you know through this newsletter.

Gary Murphy to participate in PEI Marathon

Remember, fellow Alpha Gary Murphy will be participating in the Prince Edward Island Marathon on October 18th, 2009.

Gary is participating to raise awareness of Alpha-1 and money for Alpha-1 Canada. He is the first marathon fundraiser for our disease in Canada and we would like this to be a major event for him and the Alpha-1 community. If you have not done so already, please contact us to sponsor Gary (1-888-669-4583 or jim.mundy@alpha1canada.ca).

Every donation, large or small helps, as does cheering Gary on. The Board of Directors wishes Gary well in his key endeavour.

Participating in a marathon is a huge undertaking for anyone, it is especially so for someone with Alpha-1. Watch for the highlights of Gary’s event in an upcoming issue of this newsletter.

Please show your support for Gary’s efforts to raise awareness of Alpha-1 (1-888-669-4583 or jim.mundy@alpha1canada.ca). Thank you.

World COPD Day

World COPD Day 2009 will take place on Wednesday, November 18. The theme of this year's event is "Breathless not Helpless!" This positive message emphasizes that effective treatments are available to help people who have been diagnosed with COPD feel better and live more active lives, and raises awareness that breathlessness is not just an inevitable part of getting older. Since Alpha-1 is often called “hereditary COPD” this is an important day for our community.

In addition to the "Breathless not Helpless!" theme, this year some organizers will develop sub-themes such as Early Diagnosis, COPD and Women, COPD and Smoking, and Preventing Exacerbations. Many organizers will address the ongoing story of the H1N1 influenza virus, which, as a respiratory infection, has particular import for COPD patients.

For World COPD Day Alpha-1 Canada will hold its monthly Drop-in meeting on World COPD Day, November 18th.  Please join us and watch our website for more details.

There are many things that we can do as individuals to raise awareness in our communities. If you are interested please contact Jim Mundy for some easy ideas. (1-888-669-4583 or jim.mundy@alpha1canada.ca)

Alpha-1: The End of Athletic Competition?

by Syl Gerritsma

For most of the last 50 years I have been a distance runner. Some of the time I have been moderately competitive within my age group. For instance at age 16 I could do a mile in less than 5 minutes; at 40, ten kilometers under 40 minutes; at 45, marathons in less than 4 hours.

Ironically, physical fitness both hindered and helped the diagnosis of Alpha 1. It hindered because for about 13 years my doctor kept telling me that declining performance was just due to aging and I was still faster than 95 percent of my peers anyway. It helped in that a perceptive holistic chiropractor finally recognized abnormal shortness of breath and suggested that I insist on a referral to a respirologist.

The diagnosis was hard-hitting. It required a painful psychological adjustment to recognize that no matter how hard I trained, I would never again be a fast distance runner. But I kept runningundefinedslower, of course, and shorter distances. I also concentrated more on other aspects of fitness like upper body strength which requires less aerobic effort. I wanted to maintain what fitness I could.

Slowly I began to realize that I could still experience the thrill of speed over a very short distance. So I began to train for short dashes. They don’t require the same aerobic capacity. They are finished before the oxygen deficit overcomes me.

Now I am 63 years old. I had never been in a formal 100 meter dash in my life. But the Ontario Masters Track and Field competition was scheduled in June. Why not try it?

The result amazed me! I did the 100 meters in 15.5 seconds which earned the bronze medal in my age group. The silver medal time was 15.0; gold was 13.8; fourth place was 20.61 and fifth was 21.21.

Is it hard? It sure is. I am still gasping and hardly able to walk when competitors have long ago recovered their breath. Sometimes during intense training the body panics and tells me that I am about to die in oxygen deficit because I will never catch my breath. But in the mind I have to reassure myself that I will recover and not die from this.

What’s the future? Do I have potential for improvement after that first race or is it all downhill from here? I don’t know. But I hope to have fun finding out. I still have a higher than predicted FVC (6.60) and a mediocre FEV1(2.36). I am on Prolastin, so further lung function deterioration should be moderate.

I’m waiting for the marvelous stem cell inhaler which Dr. Chapman has almost ready to go and which will rejuvenate my lungs to 19 year old condition. When that happens, watch out Usain Bolt! Here I come!

Walsh Family Patriarch, Dies at 94

John W. Walsh III, of Woburn, MA, died September 2, 2009 at the age of 94.

Jack “Coach” Walsh died of congestive heart failure in a Boston hospice, surrounded by his four children, family and friends.

Jack Walsh became extremely well-known to Alphas across the United States and beyond after his twin sons, Fred and John, were diagnosed with Alpha-1 in 1989. He made a personal commitment to support his Alpha-1-affected children in creating awareness and increasing detection of Alpha-1. He attended many American national education conferences, education days and Alpha-1 support group meetings.

Three of the four siblings in the family are Alphas; the fourth is an Alpha-1 carrier.

His four children and their spouses are Susan and Donald Ferro, John IV and Diane Walsh, Fred and Pamela Walsh, and Judith "Juba" Walsh. He is also survived by a sister, Muriel Cottrell; six grandchildren, six great-grandchildren and two nieces.

A memorial service will be held October 17, 2009 in Saint John’s Episcopal Church in Arlington, MA, a celebration of his life will follow.

Two organizations provide help for Canadian Alpha’s

Alpha-1 antitrypsin deficiency is a rare disease. For this reason many people find it difficult to believe that there are two organizations in Canada that provide services to the Canadian Alpha-1 community.

The Canadian Alpha-1 Antitrypsin Deficiency Registry's main objective is to identify and gather information about Canadians with alpha-1 antitrypsin deficiency so that they and Canadian scientists can participate in an international effort.

At the present time an International Registry has been set up with approximately 4,000 participants. There are several goals of this registry.

Initially, the Registry will gather existing medical information about people who are deficient in the protein to understand better why some people remain healthy and free of lung disease and why some people develop emphysema.

In the longer term, people who are participants in the Registry may be asked if they are willing to participate in research trials that might improve diagnosis, assessment or management of the disease.

By coordinating research efforts at an international level, the Registry scientists hope to make more rapid progress than individual scientists could achieve working in isolation.

Many members of Alpha-1 Canada are also registered with the Canadian Registry. If you are not one of them, please consider registering, you could make a significant contribution toward treatment and perhaps even a cure.

There have been some recent staff changes at the Registry. Ana Bradi, who many of you may know, has left the registry to attend medical school. This is not only great news for Ana, but also for all Alphas who can look forward to a day when another Canadian doctor will have an intimate knowledge of Alpha-1.

Please join the Board of Alpha-1 Canada in wishing Ana well in her new and challenging career.

Ana’s replacement is Heather Sporn. Welcome Heather. We look forward to a continued, long and exciting partnership. Heather can be reached toll free at 1-800-352-8186 or by e-mail at alpha1canadianregistry@gmail.com. The Registry’s new website is at www.alpha1canadianregistry.com.

The other organization that exists for you is, of course, Alpha-1 Canada. Although we have a close working relationship with the Registry we are a separate organization.

Alpha-1 Canada is a registered not-for-profit organization that exists to provide information, education and support to Canadians affected by alpha-1 antitrypsin deficiency; inform and educate the medical community about alpha-1 antitrypsin deficiency; and generate broad awareness about this genetic liver, lung and skin disease.

Alpha-1 Canada is governed by a volunteer board of directors made up of Alphas, family members and people who work in the healthcare field. The board is advised by a medical advisory board comprised of four of Canada’s leading clinicians and researchers in the field of Alpha-1.

Alpha-1 Canada is responsible for this newsletter which the Registry kindly forwards to its members as well.

Please ensure that you belong to both organizations so that you can receive the support and information you need and contribute to important research into Alpha-1.

We encourage long time members, new members and everyone in between to join our community; network with others in similar circumstances; and contact us with updates on your journey or to let us know what we can do to help (1-888-669-4583 or jim.mundy@alpha1canada.ca).

“Compelling evidence” for a benefit of statins in COPD

adapted from a Reuters Health report

In the September issue of the journal Chest, researchers at the University of British Columbia claim there is “compelling evidence” for a benefit of statins in chronic obstructive pulmonary disease (COPD), but the evidence is not yet strong enough to expand statin indications beyond vascular protection, the researchers report.

In addition to a proven role in lowering high cholesterol levels, statins also have anti-inflammatory and immunomodulatory pleiotropic effects postulated to be beneficial in COPD, Dr. John Swiston, from the University of British Columbia, Vancouver, and colleagues note in their report.

In a systematic review, Dr. Swiston’s team analyzed nine studies that evaluated the effect of statins in COPD patients. Only one was an interventional randomized controlled trial, however. The other 8 were retrospective cohorts, case-control studies, or epidemiologic analyses.

Individually and collectively, the studies showed benefit from statins in a number of COPD-specific outcomes, including lung function and exercise capacity, COPD exacerbation rates, COPD-related hospital admissions and intubations, and COPD-related mortality.

The researchers emphasize, however, that due to a lack of data from randomized controlled trials, the current evidence is not enough to support a change in clinical practice.

“Multiple observational studies in the setting of biological plausibility paints a compelling picture but is not sufficient to justify routine clinical use of statins for COPD patients,” Dr. Swiston noted in an email to Reuters Health.

“However, the current literature is sufficient to ethically and financially justify large well designed randomized controlled prospective studies. These types of studies, if properly carried out, will provide stronger evidence either supporting or refuting the utility of statins as part of medical therapy for COPD,” Dr. Swiston added.

He and his colleagues conclude, “A therapeutic intervention that positively affected outcomes, such as hospitalization and mortality rates in patients with COPD, potentially could have a huge beneficial impact on the individual, social, and economic consequences of this disease.”

Editor’s Note: According to the Canadian Heart and Stroke Foundation, Statins are medications that lower cholesterol and other fats (lipids) in your body. By lowering your cholesterol and lipid levels, you may reduce your chance of having a heart attack or stroke.

Statins help block an enzyme in the liver that helps your body make cholesterol. By blocking this enzyme, your body makes less cholesterol. The slower cholesterol production signals your liver to absorb more "bad" cholesterol (LDL) from your bloodstream. Lower LDL levels can lead to lower triglyceride levels and higher HDL good cholesterol levels.

Like any medication, statins may cause side effects. Some common side effects of these medications include constipation, heartburn, gas, upset stomach, stomach cramps, diarrhea and headache. Many of these side effects get better if you take the medication with food. As your body gets used to the medication, the side effects may go away. One rare, but potentially serious side effect, is muscle pain or damage, which usually starts as pain in the larger muscles of the legs or shoulders. If this happens, you should see your physician immediately.

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