The Story Behind The Julia Lyons Foundation

August 29, 2018 by Emily Lyons Blog 0 comments

In early August of this year – 2018 – The Julia Lyons Foundation was launched. For many years before, however, Emily Lyons has dreamed of creating this foundation. To understand why, you need to hear the story of another Lyons – Julia Marlane Lyons.

Julia Marlane Lyons – who passed away in 2011 as a result of cystic fibrosis complications – was Emily’s beloved older sister.

Julia was only 27 when she passed away, but Emily is grateful for all the time she got to spend with her: “That’s more than two decades of memories with the best sister a girl could ever ask for,” Emily said in a feature for Cystic Fibrosis Canada.

Born in 1983, Julia was just an infant – only 4 months old – when she was diagnosed with cystic fibrosis (CF). Given this diagnosis at such a young age, no one could have known what to expect from this precious little girl – but then again, Julia always had a tendency to surpass expectations with the force of her unflinching spirit.

Emily remembers so much about Julia: her mischievous humor, her fierce intelligence, her kindness and empathy – and her incredible drive to understand everything about the disease she had been born with.

Julia would go on to receive two double lung transplants – costly, demanding procedures which bought her a little more time. But, ultimately, that terrible day came: her lung complications mounted, and she passed away on the first day of June, in 2011.

Julia left an indelible imprint in the hearts and minds of many – including her sister, Emily, who sees Julia as her greatest source of inspiration and motivation.

And for years, Emily privately vowed to herself that she’d do what she could to tackle CF – and help those burdened with the disease. So now, with the launch of The Julia Lyons Foundation – created in the memory of “the best sister a girl could ever ask for” – Emily is bringing that personal pledge to life.

Our Mission

The Julia Lyons Foundation is driven by this mission: to lessen the hardships of people with CF, to lift up the CF community, and to proactively fight back against this disease – so that one day, no more tears will be shed over the devastating losses it inflicts.

Cystic Fibrosis Explained

Cystic fibrosis (CF) is a very deadly inherited disease – the most fatal genetic condition among children in Canada. A cure for CF does not yet exist.

The disease is caused by defects in a very important gene. These defects cause the body to produce mucus that’s much too thick – which clogs up the lungs and airways. Breathing is thus very difficult for people with CF – who are also at an increased risk of infection from bacteria.

But CF doesn’t just affect the lungs. It also harms the digestive system: individuals with CF often have a hard time absorbing vital nutrients – like fats, protein, and many vitamins.

Lung problems account for most deaths related to cystic fibrosis. And while lung transplants can improve the quality of life of those with CF, this is no cure: eventually, the new lungs can become severely damaged by thick mucus, lack of oxygen, and infection.

Current medical intervention for cystic fibrosis relies on symptom management through a regimen of medication, physical therapy, and surgery.

What We Do

How is The Julia Lyons Foundation accomplishing its mission?

The Julia Lyons Foundation – a not-for-profit organisation – provides financial aid directly to those in the CF community who need it most. Cystic fibrosis is a very costly disease: continuous medical treatment and monitoring is required, and lung transplants are very expensive procedures. Also, individuals with CF must often move to an entirely different city so they can be close to a hospital with the right treatment resources. All of this adds up – and can place extreme hardships on both the person with CF and their family.

We at the Julia Lyons Foundation believe that everyone with CF deserves excellent care, treatment, and aid – even those who do not have very many financial resources. Cystic fibrosis is a harrowing, lifelong battle to begin with – so it’s imperative that those with CF get all the support they need, whether financial or otherwise. The Julia Lyons Foundation makes this possible by working closely with the CF community to find those who are most in need of support.

DID YOU KNOW? CF is particularly lethal for those who come from low-income households. In fact, some studies report that there is a 44% increase in the risk of death for this population of CF patients.

The Julia Lyons Foundation is creating a much-needed mental health program for people with CF (and their caregivers). Emily can never forget how Julia had to contend not just with the physical symptoms of CF, but also with agonizing anxiety and depression – one hardship on top of another. It is well known within the CF community that this disease is very often accompanied by mental health challenges. Nevertheless, few mental health resources exist for people with CF – a glaring problem that The Julia Lyons Foundation is now addressing.

This mental health program is designed to provide therapists, mental health treatment approaches, and resources that are specifically tailored to individuals with CF – at no cost. This will help improve the quality of life of many people with CF. We think that if you have CF, you deserve all the social support, care, understanding, and friendship that you could ever want – and this program backs up that conviction with on-the-ground action.

DID YOU KNOW? Psychological distress can have a very real impact on the physical health of people with CF. Studies have shown, for example, that anxiety and depression in CF patients can result in worsened lung function. So anxiety and depression not only reduces quality of life, but can also heighten the risk of death. Further, the suicide rate among individuals with CF is greater than that of the general population – one tragic consequence of the inadequate mental health resources available to the CF community.

How You Can Help

Throughout their lives, people with CF encounter many adversities.

But they shouldn’t have to confront these challenges alone – without anyone’s help.

And – in big and small ways – most of us can do something to support and empower the CF community.

One way you can do this is by making a donation to The Julia Lyons Foundation.

Donate today and you’ll help make an incredible difference for individuals and families across Canada who are battling cystic fibrosis. We are grateful for your support of The Julia Lyons Foundation and everyone who’s taking cystic fibrosis head-on.

On behalf of all of us at The Julia Lyons Foundation, thank you.

DID YOU KNOW? There are many other ways you can show your support for the CF community. For example, register as an organ donor (if you haven’t done so already). That might sound like just a small thing you can do, but it’s actually an incredibly important – and life-saving – action.