Fundraising for lung cancer research in Canada.

When I sit back and reflect on 2019, it has been an amazing year. I’ve been able to meet so many new people, deepen relationships, and learn many things. The lung cancer community and advocacy work have both grown significantly. There are so many stories to tell and blog posts to write! 

When I look back, I clearly see growth in the numbers of lung cancer survivors who are stepping up and standing together to make a difference for others. This is largely due to the difference that new treatments make for us. Many of us benefit from targeted therapies, pills that we take daily which keep us alive and help us live fairly normal lives. Some benefit from immunotherapy, and the numbers of those who are doing well a year or more off treatment are increasing. Lung cancer research is making a difference. We rejoice and celebrate!

Anyone can get lung cancer. Increasing numbers of younger women are, and we have no idea why. We need more research to extend lives. More about this at the end of this post, and I plan to share some good news very soon.

The Ottawa support group is growing tremendously. The hope outreach tables that Andrea Redway organizes every month continue to make a real difference at the Cancer Centres. We have deepened relationships and built trust within The Ottawa Hospital, so that staff are excited about the tables and promoting them. Andrea, Kim MacIntosh and I gathered a team and entered race weekend as “Lung Cancer Team Canada”, raising money for Lung Cancer Canada (who sponsors our support group and provides patient handbooks to distribute), and showing that we are #LungCancerStrong! There are now two of us who serve as Patient Relations Advisors at The Ottawa Hospital, and I am slated to share my story there next month. I spoke at Grand Rounds with Dr. Terry Ng in June on biomarkers, a real honour and humbling experience. Another big highlight was our Second Annual Living with Lung Cancer Patient-Driven Summit in November, organized by Andrea, Dr. Paul Wheatley-Price, Jody Chaters and me, in partnership with The Ottawa Hospital, with support from LCC.

Across Canada, the most exciting highlight was the forming of a second lung cancer support group. Alyson is an advocate in Winnipeg who I’d been mentoring for some time, and she was doing great work. Wanting to grow the team, I kept looking for another lung cancer patient/survivor/caregiver in the city, who seemed interested in doing more. I found Christine’s wonderful blog and reached out to her. Together Alyson and Christine started connecting more with their lung cancer community, forming relationships with people at their cancer centre and looking for ways to serve their community. They wanted to start a support group. Our Ottawa Social Worker, Diane Manii, connected us with a social worker in Winnipeg, and the Winnipeg lung cancer support group started in the Spring! Group members stood up and applauded Christine and Alyson because they were so grateful they had started the group, which is flourishing!

Christine is in the middle with her husband, and Kim on the right.

I continue to serve as a patient research advocate, including as the patient representative for the Canadian Cancer Trials Group lung site. This Fall I served on the panel for the Canadian Cancer Society Team Survivorship Grants, and it was an interesting process, giving out $10 Million for cancer research. Sadly, none of it went to lung cancer research. I hope to learn why no lung cancer researchers applied for this grant money and work to drive change for the future.

The Canadian Cancer Survivors Network provided political advocacy opportunities at the local, provincial and national levels, and growing numbers of us took advantage. We are grateful for their ongoing commitment to and support of lung cancer survivors, and that they do very well at smoothing the pathways for us to be more easily involved in political advocacy.

It’s hard to say what my international highlight was for 2019, but I think it was participating as a mentor in the International Association for the Study of Lung Cancer (IASLC) inaugural STARS program for training patient research advocates. What an honour that Canada was chosen as one of only five teams, and both of us from The Ottawa Hospital! The six month process of mentoring Kim was enjoyable and rewarding. She has grown and flourished as an advocate. She is more knowledgeable and confident. She is finding her voice and using it in strategic ways. She spoke at our summit, has been tweeting effectively and growing relationships in Ottawa and beyond. It’s a joy to continue the mentoring relationship past the October endpoint of the program.

Part of the STARS program was held at the World Congress of Lung Cancer in Barcelona Spain in September. It was exciting to gather with so many people, all committed to conquering thoracic cancers worldwide! What a good gift to connect with advocates from around the world, united with shared passion. Some of us are exploring an international research project. I gave out many Canadian flag pins, generously supplied by MP Catherine McKenna, and also represented Canada by participating in a series of videos put out last month by Lung Cancer Europe (LUCE), which were filmed while we were in Barcelona.

It was great to gather so many Canadians at LUNGevity’s International Lung Cancer Survivorship Conference in Washington DC in April. LUNGevity shot video there which was made into a terrific video about clinical trials and released last month. It was an honour to be included. Through the generosity of a kind family, I was able to attend the ALK+ lung cancer conference in Atlanta in August, and while there I taught on Advocacy.

Social Worker Diane Manii and I presented about our Ottawa support group at the International Psychosocial Oncology Society Conference in Banff AB in September. I was surprised at how little was presented on lung cancer, but I learned a lot and met amazing people. Our presentation was very well received.

Participating in the American Association for Cancer Research’s Scientist <–> Survivor Program at their Annual Meeting in Atlanta in the Spring was a wonderful experience that opened doors. We learned volumes, met tremendous people, were greatly honoured as cancer advocates and came home changed. I am even more committed to lung cancer advocacy, and so very grateful.

I am also very grateful for Chris Draft who is a tremendous mentor to many in the lung cancer community, including me. Around the world, people speak highly of him and the difference he has made for them. He is making a real difference, supporting and encouraging us so that we can do more. His intentional engagement with a wide variety of people, and lengthy NFL experience result in a strong network with many connections who support his work in the lung cancer community. He is also a brilliant strategist who listens, thinks, and is not afraid to say what needs to be said. 

Advocacy is relational work, and requires candid conversations. One thing we often hear is that lung cancer is the deadliest cancer, yet receives very little funding for research. 

I’m a “glass is half full” kind of person who likes to focus on the positive and express a lot of gratitude. Effective advocacy requires an honest assessment of the problem. I’ll be honest with you: I’ve found it hard to speak or write publicly about one of the real problems with lung cancer research funding problems here in Canada.

If I may be open with you, for some time I’ve been aware that one of the big roadblocks to lung cancer research funding is a lack of invitations and obvious ways to donate. There aren’t foundations filled with people trying to raise money for lung cancer research. It’s rare to even find a link on a website to click on. Last year I asked the Ottawa Regional Cancer Foundation to put a link on their website to receive donations throughout Lung Cancer Awareness Month, and they did, which was wonderful, but it was only there for one month. Through my lung cancer journey, my experience is that it has generally been challenging to find a way to give specifically to lung cancer research.

It’s easy to donate to cancer in general, or to some other specific cancers, but the world’s biggest cancer killer? Very challenging here in Canada. This is a serious problem.

Lung cancer patients and advocates want more life-extending research (including clinical trials); researchers want more money. Lots of people care and are willing to give. I wonder how many have not yet given because no one asked them to give, or because they could not find a straightforward way to give.

If we want people to give to lung cancer research, we need to invite them, and also create clear pathways for them to give. 

I am passionate about this because research is extending the lives of so many people affected by lung cancer, and we need more research! We have been working behind the scenes to help open pathways for giving directly to lung cancer research here in Canada.

Research matters! More research means more survivors. Lung cancer research is cutting edge, exciting, life changing! We need to tell the stories and raise more funds for much needed research so that more people affected by lung cancer will be able to live better and longer.

Today is my six year cancer-versary. Look for exciting news about how we will celebrate!

#ResearchMatters #MoreResearchMoreSurvivors

#Shift

This past week has been one of the best of my life! It has been enormously transformational: I will never be the same. What an honour to represent Canada, to represent lung cancer, and to help spread a little bit of the tremendous amount of hope which is available.

I come home a new person with a deeper calling. I have an even bigger love for people affected by lung cancer, a stronger passion to make things better, and an unbendable will to work hard toward that goal.

It was an honour and responsibility to represent Canada and to represent lung cancer patients at the American Association for Cancer Research Annual Meeting. I worked hard to make you all proud.

Twenty-three thousand people dedicated to fighting cancer gathered in Atlanta, and I wish I could have met them all! Thank you MP Catherine McKenna and your team for the Canada flag pins! I gave out almost 100 Canadian flag pins, and well over 100 business cards, telling our lung cancer story every time. I was honoured by these cancer fighters, and met brilliant leaders in the field, people who cared and listened. They are dedicated to improving outcomes for cancer patients, and research makes a difference! More research means more survivors. I thanked them for their work, and felt honoured when they thanked me for mine.

On my way to share my advocacy story at my poster session

I have many stories to tell, many photo’s to post, and more video posts to come on YouTube. I have been honoured to bring hope to people affected by lung cancer and other cancers, living in Canada and around the world. It brings me tremendous joy to serve as a channel of hope for the lung cancer community. #ChooseHope! … and keep your eyes open for more

I’m so grateful for all I’ve been privileged to experience this past week. It was an honour to represent, and I will keep working hard for people affected by lung cancer.

Ottawa to Atlanta

I can’t tell you how excited I am to be heading from Ottawa to Atlanta on Friday for the American Association for Cancer Research Annual Meeting. This is a huge conference, with 20,000-30,000 of the top cancer researchers in the world, plus many clinicians and so many others … including me! I’m participating in their “Scientist <–> Survivor Program”, which groups cancer survivor advocates with mentors, both in advocacy and also science. That’s right: we get connected with an expert in cancer advocacy, and also a scientist mentor to help us make the most of this amazing conference! There are so many sessions, but no one can go to them all. I’ve been trying to plan which to attend, and I’m facing scheduling conflicts. So many great options!

I’m thankful they have a conference app to help us figure it all out, because this event is packed with possibilities! If you are curious about what’s happening and who will be presenting, you can browse the sessions and check out abstracts from the comfort of your own home. Here’s a link to investigate the sessions and presentations. Here’s the link to my abstract. And this is the link to donate to the great work that the AACR does, through supporting my 5K walk on Saturday morning.

The app also has maps to help us find places. No getting lost at AACR Annual Meeting 2019! It will even show the path to walk from where one is to where a particular session is taking place. (In case you were wondering, it would take about 15 days to walk from where I am now to the Georgia World Congress Center, home to this preeminent cancer research showcase. I’ll stick to my plan to fly!)

Yes, I am quite excited about this privilege to participate in the AACR Scientist <–> Survivor Program. I feel very honoured that I get to be at the Annual Meeting, and I know I’m representing Canada as well as lung cancer patients, survivors and advocates. I will endeavour to make the most of this opportunity, and I expect I will spend time with exceptional people and learn a lot while I’m there.

I wish I could take all of you with me! Since we can’t all go, I’m going to try to do the next best thing. Here is one of the ways I’m going to step out of my comfort zone while I’m in Atlanta: I’m planning to post videos on YouTube of my time there.

Here’s a link to my first one! I hope you’ll follow my adventure in Atlanta on YouTube!

Choose HOPE! Inspire courage. Incite hope. Foment communities of hope.

#AACR19 #AACRSSP19