September 2009

By now you’ve heard about our monthly Drop-in Meetings. What you may not know is that when we can, we record these meetings and now two of our past meetings are available for your listening pleasure on our new Educational Podcast webpage.

So far we have the April 29, 2009 meeting featuring Dr. Denis Marier who spoke about naturopathy as it relates to lung disease and answered questions from the audience and the May 21, 2009 meeting featuring Dr. Simon Ling who spoke about paediatric Alpha-1 liver disease and also answered questions from the audience.

Why not have a listen? Keep checking this newsletter for future meetings and more recordings. We’d rather you attended the meetings in person, but if that isn’t possible you can now enjoy the reruns!

This month’s meeting will not feature a guest speaker and won’t be recorded. We are beginning to look at developing a program and services for Alpha-affected infants, children, teens and their families. We would like to invite anyone, but especially parents and teens, to join us and share their ideas about what our new program might include.

This meeting will be on September 24th at the following times:

Please join us. The quality of our programming for liver-affected infants, children, teens and their families depends on your input.

To participate contact Jim Mundy at 1-888-669-4583 or by e-mail at jim.mundy@alpha1canada.ca.

Mark your calendar for October 22, 2009 when the drop-in meeting will feature Steve Brennan, Director Psycho/social Services/Wellness at the Hospice of Windsor and Essex County. Steve will discuss the psycho/social aspects of living with and managing disease. More details will be available shortly on our website.

Volunteering

Volunteering not only helps others, it can be good for your health, too. Research shows that "volunteer therapy" can improve your mood, strengthen your body, and lessen stress. And this works even for people who are themselves coping with a serious illness.

Volunteering can give you an increased sense of well-being and feeling of being productive.

In fact, volunteering can have health benefits too, including:

• Improved cardiovascular health. Being a volunteer can lower your blood pressure and improve heart problems. One study, done by the University of Michigan, showed that volunteers with a history of heart problems had reduced chest pain and lower cholesterol levels compared with non-volunteers.
• Lower the risk of death. Another study on older adults who volunteer regularly demonstrated that those who spend time volunteering may live longer.
• Better mental performance. Concerned about preserving your brain power as you age? An increase in mental functioning is another benefit of volunteering.
• Overall mind and body improvement. Volunteers have been shown to have reduced anxiety and depression and an overall sense of well-being. Volunteers have also been found to recover more quickly from surgery, sleep better, and have healthier immune systems compared to people who do not volunteer.

Alpha-1 Canada can provide a volunteer experience to suit your needs, abilities and accommodate your schedule.

• We are always looking for people to write for the newsletter. You would be surprised how much you canteach each other about living with Alpha-1. Sharing your experiences can help you and other Alpha’s across Canada.
• Being a not-for-profit organization means we are always looking for people to help out on the fund raising front. You don’t have to run a marathon like Gary Murphy. Be creative, what skills and experience do you have that would lend themselves to a small fund raising event? One Alpha invited friends, family and coworkers to join her in a weight-loss competition. Everyone made a small donation and the winner of the competition split all the donations with Alpha-1 Canada. In this case the winner donated her half back.
• Be a donor volunteer, raise awareness and raise funds among your family, friends and colleagues all at the same time. If every alpha donated just $10.00 and asked 10 family members, friends and colleagues to also donate $10.00…just think of the possibilities; all the while raising awareness. Contact Jim Mundy at 1-888-669-4583 or by e-mail at jim.mundy@alpha1canada.ca for more details and help with your idea.
• Are you one of those Alphas that have a really good handle on living with Alpha-1? Why not volunteer to help someone who isn’t quite so lucky and struggling. A few helpful words from you by e-mail or phone could make a world of difference for someone else and the feeling you’ll get from knowing you helped someone will put a permanent smile on your face.
• We can also use the help of people with special skills. Our new bilingual website and newsletter has presented all kinds of need for people who speak French and English.
• If you are a computer geek who knows how to help with keeping our website up-to-date we’d love to hear from you.
• We’d like to be able to use Facebook to find new Alphas to join our community. If you know your way around a Facebook page, how about managing one for Alpha-1 Canada? It might even look good on your résumé!
• We’re not so big that we think that we know everything the Canadian Alpha-1 Community needs. Maybe you’ve thought of something we should be doing that you could help with or even take a leadership role in making happen. We’d love to hear from you.
• Here’s something anybody – and even everybody - can do to help raise awareness of Alpha-1. Last month when the newsletter was published, Mimi McPhedran, Alpha-1 Canada’s President and Chairperson, sent an e-mail to everyone for whom she had an e-mail address. The e-mail talked briefly about the struggles she and her family members have gone through with Alpha-1, mentioned our newsletter and website and asked people to forward her e-mail along to their family, friends and colleagues. Over the week following Mimi’s e-mail the number of visitors to our website doubled! In fact our visitor numbers are remaining strong even today and we have heard from new Alphas and people who think they may have Alpha-1.

One e-mail and hundreds of people who had never heard of Alpha-1 now know about it. Next time you curse all those e-mails you get, think about how powerful a tool e-mail can be. If you would like to do something similar contact Mimi for her e-mail sample at mimi.mcphedran@alpha1canada.ca

 

If you follow Mimi’s example, let us know - we get nervous when the website gets busy and we don’t know why.

If you would like to volunteer in any of the above ways or have your own idea about how you can help, please contact Jim Mundy at 1-888-669-4583 or by e-mail at jim.mundy@alpha1canada.ca.

A Sense of Community

by Teryle Read

I think we have all experienced the feeling of being alone after receiving the news that we have Alpha-1. Few doctors can easily explain in layman’s terms what it is, so how do we wrap our brain around the information we find and how do we even find the information?

If we are diagnosed before there is too much damage to our lungs we can enjoy life, as we know it, with some modifications to be more vigilant about our health. We can take our time finding out about this ‘Alpha thing.’ But many of us aren’t diagnosed until we have little lung function left or we have just recovered from a serious lung infection. We’re anxious to find out as much as we can so we know all of our options. The internet is a wonderful tool but not everyone has a computer or the skills to maneuver around one. We can’t dial up information either. We feel very alone.

Up until five years ago I lived in an area with one and one half million people and had only met two other local people with Alpha-1. Where were all those Alphas the statistics say should be here, I would wonder? The doctors, the hospitals, did not or would not pass on information about other patients so how do we find them?

An Alpha-1 meeting is a magical place to be. I went to my first conference in Portland in 1998 and was awe struck. All the people there had what I had. I wanted to hug each one of them and did my best to reach that goal. There were a few other Canadians there at the time but coincidentally I was standing beside a lady in the lobby and asked where she was from. She went on to tell me where she was living as well as where she was from: my hometown. Curious, I asked what school she went to, only to find out we went to the same high school. She was a couple of years older than I so I asked her if she knew my older MZ brother. Oh, yes. She had had a huge crush on him and they had dated. We stayed in touch until she became an Alpha Angel.

Today there are so many more groups and organizations to help you find out all you need to about Alpha-1. Alpha-1 Canada has made huge strides in becoming connected with Canadians. Check out all the links listed on the website and in this monthly newsletter. Stay with it and you will have all the knowledge you need.

Time now for another simple-to-do exercise at home. After a warm up, working the lower legs and ankles, stand in place while holding onto a chair or counter. With feet slightly apart, stand up on your tip toes - hold, and relax - then back down. Do as many reps as you can, then stretch those calf muscles. Pull your feet toward you with your hand… or bend your knee and lean into it, while keeping your heel on the floor. Even with a good stretch you will probably feel stiff tomorrow. But it’s a good stiff.

Make it a bit more difficult: tuck your right foot behind the left calf and raise up on your toes, then down. Do slow and controlled movements up and down. Switch legs after a few reps. Most difficult is done on a raised stool or step. Keeping just the front of the feet on the stool, lower your heels as far as possible below the step and then back up onto your toes. If it’s still too easy, do it on one leg, and switch. Do as many reps as you can. Do your pursed lip breathing and don’t forget to stretch those calves.

Editor’s Note: Teryle’s advice about attending meetings is right on the money. The American Alpha-1 Association holds many meetings and some, like the one Teryle mentions, are just across the border.

One of the biggest differences between Canada and the US - as far as we’re concerned at least - are the laws about “Direct to Consumer Advertising” by pharmaceutical companies. In the US the pharmaceutical companies that make the medications Alphas use are allowed to have much closer relationships with patients and patient groups than in Canada. In addition there are considerably more of these companies operating in the US. These companies sponsor patient meetings and even attend those meetings setting up displays and handing out brochures and other giveaways. In Canada that would be a definite no-no.

Needless to say, this makes it much more difficult for us to afford to hold as many meetings. In fact, in Canada meetings are even more expensive since we only have about one-tenth as many Alphas spread out over an even larger country.

Alpha-1 Canada has held meetings in the past and if the money can be found or raised to do more we certainly want to. In the meantime we have been using teleconferences where Alphas from across the country can get together on the phone to meet, learn and interact.

We know that teleconferences aren’t the same as in person meetings. The kind of conversations Teryle had in Portland are much more difficult and it’s always nice to put a name to a face. On the other hand, there is no travel required to attend a teleconference, no plane tickets (if you are even able to fly) or hotel bills, no restaurant meals to pay for and you can even attend in your pajamas.

The board and staff of Alpha-1 Canada continue to look for ways to fund in person meetings of patients and in future newsletters we will provide details of our progress and about US meetings near the border. In the meantime, please join us for our monthly teleconference drop-in meetings…it’s the next best thing to being there!

September 24 2009

Drop-in meeting to discuss programs and services for Alpha-affected infants, children, teens and their families (see above).

October 22, 2009

Drop-in meeting featuring Steve Brennan, Director Psycho/social Services/Wellness at the Hospice of Windsor and Essex County. Steve will discuss the psycho/social aspects of living with and managing disease. More details to follow on our website.

November 14, 2009

US Alpha-1 Association Education Day in Ann Arbor, Michigan co-hosted by Alpha-1 Canada. More details to follow. There will also be an education day in Seattle in the New Year; we will provide details when they are available.

Who are you? We need your help

Last month we told you that we have many people in our database of Alphas and others and that for many of you, we have only your name and e-mail address. When we make representations to governments on behalf of our community, especially at the provincial level, we can’t say for sure how many Alphas there are or how many live in each province.

We know that your privacy is important to you. It is just as important to us. We do not share information about people in our database with anyone but it would help us represent you better if we knew more about you. The three most important things we would like to know about you are whether you are a diagnosed Alpha; where you live, in case we have information that isn’t suitable to be e-mailed; and the number of family members you have who have been diagnosed as Alphas.

We want to thank those of you who responded and ask others to please help us serve you better by providing us with this information. You can call Jim Mundy at 1-888-669-4583 or by e-mail at jim.mundy@alpha1canada.ca directly or sign-up on the website under “Join Us” on the side menu and fill in the blanks. If you have already registered through the website, please log in and answer the new questions.

Thank you for helping us serve you better.

Company Files Stem Cell Therapy Patent Application for Treatment of COPD

Bio-Matrix Scientific Group, Inc. announced in late August that its majority owned subsidiary, Entest BioMedical unit, has filed a patent application for the use of stem cells in the treatment of Chronic Obstructive Pulmonary Disease (COPD). Bio-Matrix is excited with the progress achieved by Entest BioMedical, Inc. in identifying diseases it believes will be treatable through Stem Cell Therapy.

Chronic Obstructive Pulmonary Disease is a major health disorder that the company believes appears to be treatable through stem cell therapy.

Steven Josephs, PhD. noted, "The approach is intended at the very least to alleviate the chronic inflammation in COPD. This is done by using agents known to coax adult stem cells that are delivered to the diseased lung tissue to release cytokines (biologically active molecules) which in addition to the anti-inflammatory effects may actually promote the regeneration of functional lung tissue."

The goal of Entest BioMedical, Inc. is to develop a stem cell therapy that reverses the effects of COPD on the respiratory system.

Forest's lung disease drug fails mid-stage trials

Forest Laboratories Inc. said a drug candidate for chronic lung disease failed in a mid-stage clinical trial, as the compound did not significantly improve lung function at any dose.

The trial was designed to discover which dose of Oglemilast was most effective at treating mild to moderate chronic obstructive pulmonary disease. Patients took either the drug or a placebo once per day for 12 weeks. Forest said Oglemilast was not much more effective than the placebo at any dose.

Forest and its partner Glenmark Pharmaceuticals Ltd. said they will continue studying Oglemilast as a treatment for asthma. They expect results from a clinical trial in the first quarter of 2010.

And you thought you were just getting old!

Researchers at Mount Sinai School of Medicine in New York City found that severe chronic obstructive pulmonary disease appears to be linked to lower cognitive function in older adults, making it more difficult for them to remember and perform daily tasks.

The researchers analyzed national data on 4,150 Americans aged 50 and older, including 492 who had COPD. Of those, 153 had severe COPD.

On a 35-point cognition scale, scores among all COPD patients declined an average of one-point between 1996 and 2002. Patients with severe COPD had significantly lower scores than those without COPD.

The results suggest that patients with severe COPD have a 22% increase in the difficulty they experience with daily tasks.

"While this number may not appear to be of major concern on the individual level, on a population level it is roughly equivalent to nearly a quarter of severe COPD patients experiencing difficulty with basic life skills," the researchers said.

"In this regard, these findings have serious implications. Often patients with cognitive difficulties, if undetected and untreated, have lower adherence to their treatment and follow-up regimens, and as a consequence may deteriorate more rapidly and have worse health outcomes," they further explained.

The researchers suggested that periods of low oxygen levels - hypoxia - may reduce cognitive ability or exacerbate illnesses like Alzheimer's disease that have an impact on memory and attention.

The study appeared in the July 15 issue of the American Journal of Respiratory Care and Critical Care Medicine.

Inhaled AAT moves another step closer

Kamada, a bio-pharmaceutical company in Israel, announced that data on its next-generation alpha-1 antitrypsin in cystic fibrosis patients was presented September 14, 2009, at the Annual Congress of the European Respiratory Society (ERS) in Vienna. As previously reported, the study showed that inhaled-AAT was safe and biologically effective.

The Phase II trial was a randomized, double blind, study that examined efficacy and safety of Kamada's inhaled-AAT versus placebo. The data showed encouraging efficacy, as measured by a reduction in sputum neutrophil elastase and neutrophil count in patients treated with Inhaled-AAT. There were no serious adverse events reported in the study and the only adverse event, possibly related to study drug, was dry mouth. The results from this proof-of-concept study demonstrate that AAT administered via the inhaled route appears safe and biologically effective.

Kamada's Inhaled AAT is a high purity, liquid formulation of alpha-1 antitrypsin, manufactured using Kamada's chromatographic purification technology, that is delivered via an optimized Investigational eFlow Nebulizer System (PARI Pharma GmbH). Kamada has successfully completed two Phase II clinical trials in cystic fibrosis and bronchiectasis and further studies in these patients, and in patients with alpha-1 antitrypsin deficiency, are planned. The product has been designated Orphan Drug status for the treatment of, alpha-1 antitrypsin deficiency and cystic fibrosis, in Europe and for bronchiectasis, alpha-1 antitrypsin deficiency and cystic fibrosis in the U.S.

Canada does not have Orphan Drug legislation…yet. We continue to work alongside the Canadian Organization for Rare Disorders and other patient groups to change that.

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

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.