POWERED BY BREATHING€¦ · breathing difficulties. We are dedicated to protecting the air we breathe and helping Albertans and residents in the Northwest Territories cope with breathing

P O W E R E D B Y

B R E AT H I N G

The Lung Association, Alberta & NWT (“TLA”) is a strong, positive force in the lives of people with breathing difficulties. We are dedicated to protecting the air we breathe and helping Albertans and residents in the Northwest Territories cope with breathing ailments, such as asthma and other chronic lung diseases, to lead normal lives. TLA is a forward-thinking partnership, committed to searching for and identifying new and better ways to help people breathe with greater ease.

“Because when you can’t breathe, nothing else matters.”

WHO WE ARE

It has been a very good year. The Lung Association, Alberta & NWT (“TLA”), like so many charities, has faced considerable challenges over the last few years in raising funds necessary to carry out the good work we want to do, but we have met those challenges. We were able to expand the scope of our lung health-related activities this past year, and we are confident that our careful planning and continued focus on the important activity of fundraising will enable us to do even better in the years to come. Increasing our visibility and awareness both of lung disease and the organization continues to be top of mind for us. We had many significant events as an organization in 2013, but one notable event was Breathing Matters Day at the legislature. We had a great attendance, loads of volunteers and we were able to identify a few people identified as “at risk” for chronic obstructive pulmonary disease (“COPD”). In 2013, we also continued to engage our community. More than 20,000 Albertans were involved in TLA during the year through our Communities of Practice, SWAP to STOP, and other events. TLA was also the grateful recipient of the Barb Tarbox Recognition and Leadership Award of Excellence in Tobacco Reduction for its successful SWAP to STOP project. I think it is important for lawyers, like myself, to give back to the community by donating their time and skills for the benefit of the community. There are many worthy causes in which I could have become involved, but I chose TLA because of my personal connections to lung disease – I have allergic asthma and my mother was diagnosed with COPD in the mid-2000s.I am looking forward to the challenges and success of the next year and the years beyond that.

Kate Hurlburt2013 Volunteer Board ChairThe Lung Association, Alberta & NWT

Message from Kate Hurlburt

Powered by breathingWhen I first began working for The Lung Association, Alberta & NWT (“TLA”) in 2000, I did not realize the true impact this would have on my life. Like so many other Canadian families, mine has been affected by lung disease. I have asthma and so do many other family members. In 2003 I was happy to welcome twins – unfortunately born seven-weeks premature. They struggled with breathing issues right from birth. When my daughter was just 11-months-old, she contracted the (RSV) respiratory syncytial virus. It was so severe that she had to be hospitalized for weeks. My heart broke to see her in isolation and to see her little nose attached to breathing tubes.Now, at 11-years-old, my twins manage their asthma by understanding their action plan and we always watch for signs of exacerbated symptoms which could lead to hospital visits. Having been with TLA for more than 14 years, my passion for non-profit work is a guiding force in my life. I am personally committed to helping those who are struggling to breathe. More than two million Canadians – many of them children – have asthma. Lung disease is currently the third leading cause of death in Canada and that trend is on the rise. We must do more to help children and adults with lung disease learn how to cope and breathe easier. We must fund more promising research and we must do more to affect positive change to the air we breathe. We must educate children on the dangers of smoking, and we

must encourage all those who have trouble breathing to seek help, education, and support.There is much to be done, and we will continue to work hard to ensure clean air, both inside and outdoors; to have a society that is smoke free; to

free children from the fear of having an asthma and allergy attack; and to bring an end to the suffering families experience when a loved one is battling lung disease. I am energized by the possibility and the potential that these diseases could be eradicated in the years ahead!

Leigh Allard President & CEO

The Lung Association, Alberta & NWT

TLA’S SUCCESS

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Breathing does matterGetting homes tested for radon

EDUCATELassoing tobacco

Hundreds of cowboys and cowgirls were able to get a head start in their plans to quit their tobacco use by swapping their products for Nicorette gum in 2013.

That vital work done by the SWAP to STOP teams was recognized when it received a Barb Tarbox Award of Excellence in Tobacco Reduction in November 2013.

The exchanges took place at a handful of rodeos and stampedes across the province – including the Canadian Finals Rodeo in early November 2013. This was the second year that The Lung Association, Alberta & NWT (“TLA”) partnered with the unique SWAP to STOP program.

Through these SWAP to STOP teams, Albertans learned about the dangers of smoking and smokeless tobacco while being connected with tobacco reduction experts on site.

This campaign in 2013 was a success as roughly 13,000 Albertans interacted with the SWAP to STOP teams while 1,400 cowboys and cowgirls swapped their tobacco products for trial offers of Nicorette gum.

The SWAP to STOP program is important as tobacco companies are continuing to sponsor rodeo events across the province. As a result, rural Albertans are among the highest users of smokeless tobacco in the province.

Bucking a trend in lung health

Drew Husch knows what it means to struggle for every breath.

The 15-year-old Ardrossan resident received a life-saving double-lung transplant surgery five years ago in Edmonton. As 2013’s National Christmas Seals ambassador for The Lung Association, Alberta & NWT, the teen reminded all Albertans to commit to donating their organs.

“This is a very important thing to do because there are lots of people who need transplants,” said Drew during a news conference in early December 2013.

“Without it, I would not be able to play hockey, or have the life I enjoy today.”

Drew was only nine years old when his cystic fibrosis symptoms worsened, he was then placed on a double lung transplant list. His family waited for nine long months before health officials could find a set of lungs that were the right fit for the hockey playing youth.

“This was a scary time for the family,” said the teen’s mom, Michelle Husch about the long wait. “It was a

pretty exciting time for all of us when we received the phone call.”

Drew and his family urge all Albertans to take advantage of new changes by the Alberta government that will make it easier for those who want to commit to donating their organs and tissues when renewing their driver’s licences, or other pieces of identification. They

will also be able to give their consent online. These new changes – advocated by TLA – are an important step to address a massive shortage in organ donations in Alberta while

eliminating the barriers for those that want to commit to organ donations.

Households across Alberta were urged in 2013 to find out the levels in their homes of a lung cancer-causing gas that is odourless, tasteless, and invisible. Radon, a radioactive gas that is found in many homes across Canada, is created naturally as uranium in the ground breaks down. In order to spread the awareness about radon – a gas that in high levels causes 16 per cent of lung cancer cases in Canada – an awareness campaign was launched in November.

“It is a health risk that not many Albertans are aware of, but the risk does exist in communities across the province,” said Amy Elefson, program specialist of environment and health at TLA, to media across the province in November 2013.

“Testing your homes for radon is the only way to be sure you and your family are safe from exposure.”

In order to get legislators to understand how important respiratory care is in Alberta, a one-day clinic was moved into the Alberta Legislature in May.

The clinic provided spirometry tests to MLAs and medical experts were on-hand to view and talk about the results of those tests. This event was one way to educate legislators about the high prevalence of lung diseases that include asthma and Chronic Obstructive Pulmonary Disease.

Patients, caregivers, and medical experts were on hand to ask the government for their continued support for lung health.

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Low-income seniors who are coping with sleep apnea are now able to access provincial funding for a Continuous Positive Airway Machine (CPAP). Through advocacy work done by The Lung Association, Alberta & NWT (“TLA”) in early 2013, funding for CPAP machines are now available through Alberta Health’s Special Needs Assistance for Seniors Program.

The machines are the best treatment for this serious breathing problem that could lead to health risks, fatal collisions, and early death.

Tough on tobacco The gift of life

Alberta has one of the worst organ donation rates in the country.

However, with new changes made by Alberta’s government in 2013, hopes are that trend will begin to change. After advocacy work done by The Lung Association, Alberta & NWT, Alberta’s government passed Bill 207, the Human Tissue and Organ Donation Amendment Act.

The changes will allow Albertans to commit to donating their organs and tissues when renewing their driver’s licences, or other pieces of identification. They will also be able to give their consent online.

These new changes are an important step to address a massive shortage in organ donations in Alberta while eliminating barriers for those that want to commit to organ donating.

Compassionate care

New laws pushed through by Alberta’s government were a boost for lung health across the province.

That includes Bill 203, which was passed last spring making it illegal for an employer to terminate or lay off a worker who is eligible to take time off to care for a seriously ill family member.

Under the new law – advocated by The Lung Association, Alberta & NWT – an employee is now allowed to take an unpaid leave of up to eight weeks if he or she is the primary caregiver of a seriously ill family member.

Waking up

ADVOCATE

What a year!

Alberta’s government passed some of the toughest anti-tobacco laws in the country in 2013, including a ban on smoking in vehicles where children are present.

That law, known as Bill 33, was passed in November 2013, along with a ban on selling flavoured tobacco products across the province with Bill 206. The new laws also make it illegal for cafes and other eateries to allow shisha smoking in their businesses.

The Lung Association, Alberta & NWT was at the Alberta Legisla-ture every step of the way to work with the government for changes to curb soaring rates of youth smoking, along with addressing questionable marketing tactics made by tobacco companies.

“Over the past decade, tobacco companies have flooded the market with flavoured tobacco products and the impact is devastat-ing,” said TLA CEO Leigh Allard after the decision made by the province.

“Alberta’s government deserves full marks for its efforts to protect children and youth from the serious health implications of smoking.”

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Wayne Cao, Alberta's deputy speaker and MLA for Calgary-Fort

National statistics show chronic obstructive pulmonary disease (“COPD”) is the fourth leading cause of death in Canada – more than traffic collisions, more than diabetes, more than suicide, Alzheimer's, flu and kidney deaths.

A conservative estimate of the total cost of COPD to Canada’s health care system is $1.5 billion a year. One in every seven people with COPD say they have stopped working permanently because of their debilitating illness. This illness, along with other lung-related diseases, is also one of the most underfunded when it comes to vital research in finding cures and new treatments.

“The research being done by my lab and others across Canada is fundamentally important to get new interventions and therapies out for patients with COPD,” said Dr. Don Sin, an Edmonton-born researcher who is part of a project – funded by The Lung Association, Alberta & NWT (“TLA”) – to help find new ways to treat COPD by studying a patient’s blood work.

“The burden will continue to rise in Canada despite the reduction in smoking. The interventions to slow down (lung) disease without good research will not be there.”

Most of the research funding from TLA comes from money raised through private donations and fundraising events like the Edmonton StairClimb and TLA’s annual Christmas Seals campaign – an annual Alberta tradition since TLA began in 1939.

Through TLA’s grants, researchers like Sin have access to these privately raised funds that will help find new treatments for illnesses like asthma, sleep apnea, and influenza – or a new cure for debilitating illnesses like COPD, pulmonary fibrosis, and lung cancer.

Work is ongoing to help those who are going through lung transplants at Edmonton’s University hospital. Through a unique program dubbed Second Breath, The Lung Association, Alberta & NWT (“TLA”) has helped guide patients through the processes while providing support. Patients who undergo lung transplants – particularly those who live outside the Edmonton region – can face financial hardships as they are expected to stay in Edmonton for a minimum of four months.

Currently assistance through gift certificate care baskets that will help pay for living costs, including parking fees, fuel, food, and accommodation.

Baskets may also include necessary equipment like blood pressure cuffs, a microspirometer, and a digital thermometer.

Talk about being handy. Through a helpful partnership with a web-based coordination service, The Lung Association, Alberta & NWT is able to help families, friends, and neighbours of those who are suffering from debilitating lung-related illnesses coordinate tasks for caregivers.

The online service, Lotsa Helping Hands, is an easy to use calendar that is designed for organizing helpers. This service allows family members and friends to pitch in with meal deliveries, rides, and other tasks neces-sary for life to run smoothly during a crisis.

SUPPORTFinding cures for lung disease

A second breath

Lots and lots of helping hands

To sign up to a Lotsa Helping Hands community, go to lungabnwt.lotsahelpinghands.com

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GET INVOLVED

There are so many ways supporters can get involved with The Lung Association, Alberta & NWT.

Here are some suggestions:

• @lungabnwt

• www.facebook.com/lungassociationabnwt

• Write to us: The Lung Association, Alberta & NWT

P.O. Box 4500, Station South

Edmonton, Alberta

T6E 6K2

• Visit our office at suite 208, 17420 Stony Plain Road in Edmonton.

• Pinterest.com/lungabnwt • Send us an email at [email protected]

Like

Follow

Donate today! Your support will help us find new cures and treatments for lung disease, advocate for changes that will benefit lung health, and support those patients and their families who are suffering from lung related illnesses. Here are a few ways on how to support lung health in Alberta and the Northwest Territories:

• Making cheques payable to The Lung Association, Alberta & NWT and drop it off by visiting our office or mailing it to: The Lung Association, Alberta & NWT P.O Box 4500, Station South Edmonton, Alberta T6E 1K6

• Donate by phone by calling 780-488-6819 or toll free at 1-888-566-LUNG (5864). • Donate online by visiting www.ab.lung.ca/site/donate and follow the links.

The Lung Association, Alberta & NWT is a registered charity. We automatically provide charitable receipts for any gift of $15 or more. However, upon request, we will provide a receipt for a gift of less than $15.

DONATE

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WHAT’S NEXT

After already making one heart-wrenching decision, Peter Harvey is faced with another emotional dilemma. Being diagnosed with a debilitating lung disease in November 2009, the 65-year-old southern Alberta resident had to shut down his 30 year old family-owned greenhouse and woodworking businesses.

“Closing my businesses was a sad day – I had to throw away all of my plants,” said Harvey who lives on an acreage near De Winton, a small hamlet roughly 40 km south of Calgary.

Harvey was diagnosed with idiopathic pulmonary fibrosis, a life-altering disease that creates scarring in the lungs making it extremely difficult for him to breathe. With no known treatments for the disease, the senior has been waiting for four years for lung transplant surgery.

To prepare for the procedure, candidates and their full time caregiver must take a mandatory six week assessment and training course at the transplant hospital. Not knowing anyone in Edmonton, he had to pay $160 a night to stay in a two-bedroom apartment suite for 40 days in Edmonton last summer.

“That was a big hit,” said Harvey who also had to pay for a room for his caregiver’s stay in Edmonton.

Once Harvey receives the phone call to come to Edmonton for the transplant surgery, the senior says he will consider selling his 48 acres of property just to pay for the living expenses during his minimum four-month stay in Alberta’s capital city.

“If push comes to shove, I guess (my sister and I) would have to sell our property. Otherwise, we won’t be able to manage,” said Harvey.

Like Harvey, many people every year are faced with this same decision.

University of Alberta Hospital is only one in five hospitals in Canada to offer lung transplants – the only treatment for many lung diseases. When two people – even those who are both wage earners – are taken from their jobs, must maintain their own home, and stay in Edmonton in medically conducive housing, it can cause an insurmountable financial burden.

The Lung Association, Alberta & NWT has been working since 2010to provide a home away from home for people like Harvey. Our plans are to build Canada’s first lung transplant treatment residential facility. Besides providing a home away from home for people like Harvey and his caregiver (his sister), Lung House – as the project is currently called – will provide education, support and services for many more individuals and families who are dealing with lung health issues.

“There is help for those who live in Edmonton currently, but for those who live out-of-town who need to come to Edmonton for transplants, there is nothing provided for them,” said Harvey.

“You’re on your own.”

TLA’s long term vision is to build a facility that will provide rooms for a resource library, meetings and supports. It will also be a hub for services that will include individual and family counselling to deal with the tremendous stress of living with lung disease and grief counselling for relatives of those who succumb.

A home away from home for transplant patients

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Peter Harvey

Celebrating 75 years of history

How money is raised:

How every dollar donated is spent:

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37 cents - Services and programs

23 cents - Fundraising expenses

13 cents - Gaming expenses

12 cents - Administration expenses15 cents - Research programs

For detailed information about the financials from The Lung Association, Alberta & NWT, go to www.ab.lung.ca. You can also call 1-888-566-LUNG (5864) to request to have a financial report mailed to you.

There is a reason why 2014 will be considered a diamond year for The Lung Association, Alberta & NWT. It’s a milestone as TLA will celebrate its 75-year history throughout 2014. Since 1939, The Lung Association, Alberta & NWT (“TLA”) has been the primary information source for lung health, as well as continuing to raise funds for critical research and patient support programs, along with advocating for changes in public policy. The Lung Association, Alberta & NWT has a reason to celebrate as 2014 marks our 75th Anniversary!

Our story began when the Alberta Tuberculosis Association was created to educate the public about a dangerous and deadly respiratory illness known as tuberculosis. Along with education, the association also provided mass chest X-rays and rehabilitated services for TB patients. After TB was nearly eliminated in Canada during the late 1970s, TLA – with a new name – broadened its scope to encompass all aspects of lung health. Current areas of focus include issues related to asthma, COPD, lung cancer, sleep apnea, flu, infectious lung-related diseases, and tobacco.

As it has during its 75-year-history, TLA has also helped hundreds of Albertans and residents in the Northwest Territories with smoking prevention and cessation programs.

We are also passionate about focusing on air quality across Alberta and the Northwest Territories. Stay tuned to YouTube, Twitter, and Facebook as we will continue celebrating our

diamond anniversary.

TLA BY THE NUMBERS

2% - Government Grants

14% - Gaming Revenue

84% - Fundraising donations

P.O. Box 4500, Station SouthEdmonton, AlbertaT6E 6K2

www.ab.lung.ca/site/donate 780.488.6819Toll free: 1.888.566.LUNG (5864)