Connect with a coordinator
Get personalized support by connecting with a coordinator who can guide you through managing your Alpha-1.
AlphaNet Canada Coordinators
AlphaNet Canada services are provided through direct contact with AlphaNet Canada Coordinators. A coordinator is assigned to each province. A bilingual coordinator is assigned to Quebec and is available to speak with all other French speakers. Each coordinator is an Alpha, is living with symptoms of the condition, and has received both initial and ongoing specialized training. The coordinators can guide Alphas through many of the challenges they face, answering questions and providing emotional support when needed. The coordinator also serves as a resource, keeping Alphas up-to-date with the latest information about Alpha-1 and the Canadian Alpha community.
AlphaNet Canada Coordinators’ Services include:
Being available to answer questions within one business day
Contacting each subscriber on a monthly or other agreed upon basis to ensure lines of communication remain open and that support is provided as needed
Providing education about Alpha-1 and how to live healthier lives through proven disease management techniques
Sharing information about current clinical trials and research
Connecting subscribers to other Alpha-1 resources
Facilitating participation with quality of life questionnaires which may be used for AlphaNet Canada research
Connect with a coordinator
Jon Holmes
I’m Jon Holmes, and I proudly serve with AlphaNet Canada supporting Ontario and Prince Edward Island.
My journey with Alpha-1 Antitrypsin Deficiency began in 2011, a pivotal moment that has deeply influenced my understanding of the challenges faced by individuals with this condition. Despite contending with asthma since childhood, I remained active in athletics. However, around 2010, I experienced a resurgence of respiratory issues during vigorous outdoor activities, leading to my Alpha-1 diagnosis after nearly two decades of symptom-free living. Following my diagnosis, I underwent augmentation therapy from 2013 until 2017, when I eventually received a life-changing bilateral lung transplant in Toronto in 2020.
Beyond my medical experiences, I bring a wealth of expertise as an Industrial Designer specializing in marketing. Over the years, I’ve worked across diverse industries, including architecture, contract furniture, and bio/medical technology, infusing my work with creativity and innovation. Outside of the professional realm, I’m an avid outdoorsman, finding solace and joy in angling, foraging, camping, hiking, and canoeing whenever possible.
Joining the AlphaNet Canada Team has been immensely fulfilling for me. I cherish the opportunities to connect with fellow Alphas, sharing our experiences, and providing support where I can. Moreover, I’m passionate about contributing to the advancement of Alpha-1 treatments by offering insights to researchers, fueled by the hope of one day finding a cure.
With dedication, empathy, and a shared mission, I strive to make a meaningful impact within the Alpha-1 community, embodying resilience and advocacy every step of the way.
Ileine Matton
I was diagnosed with Alpha-1 Antitrypsin Deficiency in the winter of March 2008. Until that point, I had never experienced any visible deterioration of my respiratory functions except for having, what I was told at the time was, chronic bronchitis. I was getting out of breath quickly. A change of physicians and a few tests later and the Alpha-1 diagnosis was made—and confirmed! I have been on augmentation therapy since September 2015.
I was born in a little French speaking town just outside of North Bay called Astroville in Ontario. I currently live in a tiny community close to Barrie and volunteering in my community is very important to me. I also enjoy gardening, travelling, quilting, reading, yoga, walking, my precious grandchildren and my husband whom has been the most supportive person through all of this.
I really enjoy working with people. I have worked at a Bilingual Employment Centre in Ontario with different levels of responsibilities including supervisory experience. As I continued my journey and working full time, it became important for me to return to College and complete several courses such as Human Resources Manager, Career and Information Specialist, Employment Coach, Supportive Counselling and Common Assessment. I work as a Bilingual Clerical support person for the municipal government office.
I am humbled and honored to be a member of the AlphaNet Canada Family. I want to give back, and help other Alphas. I am looking forward to learning from everyone’s experience and I believe that we have the potential to build a unique community. Together we can support each other, and provide vital information to researchers which will ultimately help in finding a cure. I look forward to connecting with you.
Rick Scott
My name is Rick Scott, and I am the AlphaNet Canada Coordinator for New Brunswick, Nova Scotia, and Newfoundland.
I live in London, Ontario with my wife Zoe and we also have a home in Venice Florida. I took an early retirement from Scotiabank after a 30 year career in the Automotive Finance field where I oversaw our operations internationally in the Caribbean, Mexico and Central and South America. Since retiring we have renovated 3 houses and in my spare time I enjoy golf.
I was diagnosed with Alpha-1 in 2010 as a result of my wife’s persistence in getting to the bottom of my constant shortness of breath. The first pulmonologist that I saw put it down to chronic bronchitis and emphysema attributed to smoking despite the fact I had quit smoking some 35 years earlier.
My wife continued to research and upon coming upon Alpha-1 we asked the pulmonologist to do an AAT blood test. When the results came back, he advised that my tests were “a little low”, his definition of a little low was 50 compared to a norm of 1000. We were able to get a definitive diagnosis as a result of a gene testing program being conducted in Florida. My test results came back as ZZ.
I was referred to Doctor Chapman in Toronto and was able to commence a test study that he was conducting for an inhaled medication to treat Alpha-1. At the end of that study I was able to commence augmentation therapy in 2013 and since then I have been stable with no further lung deterioration. I owe my ultimate diagnosis to the persistence of my wife Zoe.
I’m delighted to join the team of AlphaNet Canada coordinators to that I can give back and help other Alphas.
Mike Benn
I was diagnosed with Alpha-1 Antitrypsin Deficiency in 2006. I had no symptoms at all until I turned 56 years old. I started having significant breathing issues in 2005, was initially misdiagnosed with asthma, and fortunately tested for Alpha-1 about a year later by an allergist. My major symptom is chronic bronchitis. I began augmentation therapy in 2007.
I was a U.S. Navy officer for 26 years, retiring in 1996. I subsequently spent time as a corporate recruiter, a small business owner, and financial advisor. My financial advisor career ended in 2009, much earlier than planned, due to breathing issues. Shortly thereafter, I became a Patient Services Coordinator for AlphaNet in the U.S. I served in that role until early 2021, adding responsibilities as the AlphaNet Canada manager in 2014. When an AlphaNet Canada Coordinator position became available in early 2021, I arranged to assume that position myself, and now focus on Alphas in Canada full-time.
I grew up in Hannibal, Missouri, left for 30 years, and moved back with my wife Pat when I retired from the Navy. I spend much of my time off on the lake bass fishing.
My own AlphaNet Coordinator was invaluable to me when I was first diagnosed. My goal with AlphaNet Canada is to provide the same level of assistance to Canadian Alphas.
Mike Benn
My name is Mike Benn. I have been the manager of AlphaNet Canada since its launch in 2014, and currently also serve as the AlphaNet Canada Coordinator for British Columbia and Yukon.
I was diagnosed with Alpha-1 Antitrypsin Deficiency in 2006. I had no symptoms at all until I turned 56 years old. I started having significant breathing issues in 2005, was initially misdiagnosed with asthma, and fortunately tested for Alpha-1 about a year later by an allergist. My major symptom is chronic bronchitis. I began augmentation therapy in 2007.
I was a U.S. Navy officer for 26 years, retiring in 1996. I subsequently spent time as a corporate recruiter, a small business owner, and financial advisor. My financial advisor career ended in 2009, much earlier than planned, due to breathing issues. Shortly thereafter, I became a Patient Services Coordinator for AlphaNet in the U.S. I served in that role until early 2021, adding responsibilities as the AlphaNet Canada manager in 2014. When an AlphaNet Canada Coordinator position became available in early 2021, I arranged to assume that position myself, and now focus on Alphas in Canada full-time.
I grew up in Hannibal, Missouri, left for 30 years, and moved back with my wife Pat when I retired from the Navy. I spend much of my time off on the lake bass fishing.
My own AlphaNet Coordinator was invaluable to me when I was first diagnosed. My goal with AlphaNet Canada is to provide the same level of assistance to Canadian Alphas.
Anne Thiffault
With 30 years of experience in the aeronautics sector as a human resources manager, project manager and customer account manager, I have taken on many challenges and always succeeded in putting people first. I retired from the industry in 2021 but wanted to take on other challenges. I am delighted to now join the AlphaNet Canada team of Coordinators. I had many lung problems in my childhood and adolescence. Repeated pneumonia led me to have a lobectomy of my left lung at 14 years old. I was then able to do all the activities I wanted. I was a swimming pool and beach lifeguard, a swimming and
downhill skiing instructor and did a lot of aquafitness throughout my studies.
In 2017, at age 50, I started having more severe breathing problems during demanding exercise. I experienced lots of shortness of breath and an unusual lack of energy for me. After pulmonology tests, the diagnosis came in 2018, Alpha 1 deficiency, ZZ genotype. I started augmentation therapy shortly after and I still have my infusions once a week. My condition is now stable. I still enjoy swimming, and for several years, perfecting my golf technique.
I am convinced that my Alpha peers and I will be able to build a relationship of trust and that our discussions will eventually help other Alphas.
Je suis Anne Thiffault, Coordonnatrice bilingue pour la province de Québec. Je demeure à Blainville depuis 10 ans, après quelques années à Toronto et à Québec.
Forte d’une expérience de 30 ans dans le milieu aéronautique à titre de gestionnaire en ressources humaines, gestionnaire de projets et gestionnaire de comptes-client, j’ai relevé de nombreux défis et toujours réussi à mettre l’humain en avant plan. J’ai pris ma retraite du milieu en 2021 mais je souhaitais relever d’autres défis. Après quelques mandats reliés à mon expertise, je suis ravie de me joindre maintenant à l’équipe de coordonnateurs d’AlphaNet Canada.
J’ai eu de nombreux problèmes pulmonaires dans mon enfance et adolescence. Des pneumonies à répétition m’ont amenée à subir une lobectomie du poumon gauche à 14 ans. J’ai ensuite pu faire toutes les activités que je souhaitais. J’ai été sauveteur en piscine et plage, monitrice de natation et de ski alpin et fait beaucoup d’aquaforme tout le temps de mes études.
En 2017, à 50 ans, j’ai commencé à avoir des problèmes respiratoires plus importants lors d’exercices exigeants. Beaucoup d’essoufflements et un manque d’énergie inhabituel pour moi. Après des tests en pneumologie, le diagnostic est tombé en 2018, déficit en Alpha 1, génotype ZZ. J’ai débuté une thérapie d’augmentation peu de temps après et j’ai toujours mes perfusions une fois semaine. Mon état est maintenant stable. J’ai encore du plaisir à nager, et depuis quelques années, à perfectionner ma technique au golf.
Je suis convaincue que mes pairs Alpha et moi sauront bâtir une relation de confiance et que nos discussions sauront éventuellement aider d’autres Alphas.
