STARS in Spain

The International Association for the Study of Lung Cancer (IASLC) has a new program for training patient research advocates, called STARS. The six-month training process began back in May when five Patient Research Advocates were chosen from around the world. It continues with webinars, calls and mentoring, culminates with the IASLC World Conference on Lung Cancer next week, and concludes with presentations in October.

The IASLC Supportive Training for Advocates on Research & Science (STARS) program aims to increase the number of Patient Research Advocates (PRAs) equipped to provide accurate scientific translation in their online or real-life lung cancer patient/caregiver groups and to provide the patient perspective for lung cancer research and policy.

More here.

I am very happy to report that Canada was chosen for one of the STARS positions. Our very own Kim MacIntosh, who lives in Cornwall Ontario and is part of our Ottawa Lung Cancer Support Group, is one of only five STARS worldwide! She has been learning more about lung cancer research and advocacy through webinars and conversations. Each one of the STARS is paired with a mentor for six months, and I’m delighted to be a mentor for Kim. We are both treated at The Ottawa Hospital.

Kim (with Chris Draft and me) at our #LungCancerStrong event in May 2019. Kim was a valuable planning team member who got the tee shirts printed and organized.

The IASLC World Conference on Lung Cancer (#WCLC19) is the world’s largest international gathering of clinicians, researchers and scientists in the field of lung cancer and thoracic oncology. This year it takes place September 7-10 in Barcelona. Kim and I will be there, representing Canada, along with Christine Wu who earned one of only five IASLC patient advocacy travel awards for her hard work in lung cancer advocacy. Among other achievements, Christine helped start the Winnipeg support group. I look forward to connecting with people, examining best practices and exploring partnerships that will best serve the Canadian community.

We know that representing Canada at #WCLC19 is a privilege and responsibility. We welcome questions, and will do our best to track down experts there to answer them. We will be sharing information about new lung cancer research with other lung cancer advocates who are leaders in their communities, and posting on YouTube, facebook, Twitter and Instagram. Please follow us and share the news about lung cancer research. It’s up to all of us to share about the exciting advances which are changing outcomes and extending lives.

Christine (above) and some Canadian survivor advocates & friends who have been to LUNGevity’s Hope Summit, Washington DC, 2019 and 2018 (below right)

I owe a debt of gratitude to many people and partners who helped prepare me for this mentoring role in the STARS program. I am especially grateful for the American Association for Cancer Research Scientist <–> Survivor Program, which I participated in last Spring at the Annual Meeting in Atlanta, #AACRSSP19. There cancer advocates were engaged, equipped, and honoured for their work. I am also very grateful for the ways I am learning through serving as Lung Site Patient Representative for the Canadian Cancer Trials Group, and the mentoring of International Lung Cancer Advocate Chris Draft.

Are you going to #WCLC19? Is your doctor? If you or anyone else you know is going, please be in touch and encourage her/him to connect with me. I’m looking forward to meeting more members of our lung cancer community!

What is happening at your local cancer centre for Lung Cancer Awareness Month (#LCAM)? At The Ottawa Hospital Cancer Centre, our team of survivors plus Ottawa Hospital people have already started planning our second annual survivor-driven Lung Cancer Summit, geared to the Ottawa community. This is a great opportunity to share exciting new research from the World Conference for Lung Cancer out into the community.

Dr. Paul Wheatley-Price is a stellar Ottawa Hospital oncologist, and President of Lung Cancer Canada. Andrea Redway (in the background with the white hat), is a great friend and Survivor Advocate. I am grateful for such dedicated teammates.

Cancer Centres plus advocates are a great combination! If we don’t tell people about exciting advances in lung cancer research, who will? It’s up to us to spread the news about the difference lung cancer research is making for survivors! #ResearchMatters #ResearchWorks

Please let me know what is happening in your community.

Jody of The Ottawa Hospital is awesome! She works hard to make her administrative endeavours appear effortless. She is a great support and encourager!


In the Bleak Midwinter

First of all, dear friends, let me remind you that January is radon month, so if you haven’t checked your home for radon, please do it this week-end! Radon is the second leading cause of lung cancer. Please protect yourself and your loved ones by getting a test kit this week-end and using it! You can read more in my previous blog post: How Two Trips to the Basement Could Save Your Life. Thus ends my radon public service announcement! 🙂

You’re probably wondering what I’ve been up to lately, besides hanging out with my boys and walking the dog. The answer is LOTS!

The Ottawa support group is going well: 13 out at our January meeting. We have an awareness day planned at the General next Thursday. Drop by the Cancer Centre and say hello if you’re around!

Our December Ottawa support group party, with a delicious and generously catered meal from Chances R Restaurant

I’m working at collecting and connecting lung cancer patients across the country, so if you know of any, please send them in my direction! Today I was talking with dear folks in Winnipeg. Yesterday it was Calgary. It can be pretty lonely here in Canada, without other lung cancer friends around! That’s why I’m working to find and connect lung cancer patients in various geographic regions across this large land. I hope we will have patient support groups, awareness days and summits across the country!

There aren’t enough hours in the day! I love serving as a catalyst, a creative problem solver! I’m energized by this work, and eager to meet people, gather them together, and help build lung cancer communities.

I joined the Canadian Cancer Trials Group as (volunteer) patient representative, Lung Site, in November. The CCTG develops and conducts clinical trials, and includes all major cancer centres and many community hospitals across the country. This will afford me the opportunity to meet people doing lung cancer research across the country, and that should help with my community building work! As patient representative, I have opportunities to give input into the clinical trial process at many points along the way. Steep learning curve and big responsibility! It’s important that I get to know a wide variety of lung cancer patients so that I can fulfill my obligation to represent us all. I hope to listen and learn a lot in the coming months and hopefully years. I hope to live long enough to fulfill my three year term commitment. Perhaps another clinical trial will help extend my life once again!

I’ve also applied to the Scientist-Survivor program at the American Association for Cancer Research Annual Meeting this Spring in Atlanta. What a wonderful opportunity to meet researchers, advocates, oncologists and learn many things about research into all kinds of cancer, then pass my learning along to many others! I should hear any day if I’ve been accepted, and I am eagerly hoping!

Christmas Day 2018

But it’s not all lung cancer around here. Sadly, Jono’s Mum is extremely unwell. Jono and our youngest rushed off to Australia right after Christmas to be with her and the rest of Jono’s family. We wished we all could have gone. They shared many joyous times together in the midst of such sorrow, and have just returned home. We’d be grateful if you could spare a prayer or warm thought for the family as it seems the end is drawing near.