The Super Bowl Challenge is over, but the fundraising continues! It’s not too late to give to support people affected by lung cancer! Please note Team Jill’s new Canadian page 2020 link: http://donate.ottawacancer.ca/goto/teamjill
Going to the Super Bowl is the cherry on top of the real prize which is really about raising money and challenging our communities to stand up for people affected by lung cancer. The Super Bowl Challenge is over but the fundraising is not!
I’m here, alive more than 6 years after diagnosis. The lung cancer is controlled by one pill each day. We’re not ready to call this a chronic disease like diabetes, but for people with a diagnosis like mine, the median survival is 6.8 years. Those 6 years mean a lot. My kids have gone from being 6, 10 and 12 at time of diagnosis, to now being all teenagers. What a privilege, what a gift to be here with them! These 6 years mean a LOT!
Research matters! Research means more people with lung cancer will live longer. It is imperative that research is ongoing, and also that everyone diagnosed with lung cancer in Canada gets access to the best treatments available. That means biomarker testing and faster approval of effective treatments. Clinical trials give people access to new effective treatments.
It’s a shame we weren’t able to raise more money and create more access to treatments. We are continuing to work on opening up pathways: it shouldn’t be so hard to give money for lung cancer research!
Team Jill’s Canadian page has been migrated to its brand new 2020 link! Since that’s ready, Team Jill will be fundraising more actively again until the Feb. 3 deadline!
Once we raise $5000USD, 90% of the total raised will go to Ottawa lung cancer clinical trials. The other 10% will go to Team Draft’s excellent lung cancer initiatives.
Chris Draft gives tremendous support and leadership to lung cancer survivors and advocates around the world. He has made a strategic difference here in Ottawa, connecting with Louise and the Evening of Hope Team, Elizabeth Dessureault and her family, Kayla and Jordan MacWilliam and their community, and many more. We are grateful for him and his wisdom and encouragement.
The pipers are lung cancer fundraisers. Cheers to all who fundraise for lung cancer. Cheers and thank you!
Cheers to all fundraisers in the Super Bowl Challenge! Here are the current Top 5: Team Angie Downs & Fred Hutch Lung Cancer Research Center / Seattle Cancer Care Alliance; Lisa Moran & Lung Cancer Colorado Fund; “Team Hope,” (Christie Malnati, Sandy Shea and Kathy Weber) & International Lung Cancer (ILC) Foundation; Gina Hollenbeck & Baptist Memorial Health Care Foundation Memphis; Dy Wakefield & The American Lung Association Charleston SC. Great causes! I urge you to give! I especially want you to support Team Jill, but above all, give to lung cancer, please! Everyone who fundraises is a winner because we are all raising funds for a good cause.
Team Jill is currently in 6th place, but that can change in a hurry! We are coming up to the deadline and it’s not too late to give!
Last year we placed 4th and the top 3 fundraisers were winners. Many of you told me you were watching the donations, ready to give more if it would bump us into top 3, but you didn’t give because your amount wasn’t quite enough.
Please don’t wait for someone else. Please step up now! It takes a #team to tackle lung cancer. We need everyone!
If all of us gave what we could, it might bump us into top 3. Whether or not it does, it would be money given to a good cause. So please give what you can, whether it’s $10, $100, $1000, $10,000 or more. Lung cancer research extends lives!
A clinical trial partly funded by The Ottawa Regional Cancer Foundation extended my life back in 2015. If not for that clinical trial, my kids probably would have lost their Mom at ages 14, 12 & 8. We are grateful beyond words to everyone who donated to make that clinical trial happen.
We fundraise so that other young kids won’t lose their Mom so young.
We fundraise because research extends lives of even the worst cancer killer by far (lung cancer). Every dollar you give makes a difference.
Every dollar helps. Please give what you can.
It’s not too late to give to lung cancer clinical trials. Please step up and give, #team!
HUGE THANK YOU to all who have given so far in our 12 Days of Giving to Lung Cancer Clinical Trials!!
THANK YOU for giving to lung cancer clinical trials!!! You are making a difference for people now and into the future! It takes a team to tackle lung cancer. Thank you #team!
Your gift will help people living with lung cancer experience longer and better survivorship, and it will contribute to the eradication of lung cancer. That means so much. Thank you.
Huge thank you to Team Draft and Chris Draft for your hard work putting on the Super Bowl Challenge, developing leaders and supporting people affected by lung cancer around the world. You make a real difference. Today marks eight years since Keasha Draft’s passing. Chris, you have put in far more work than we realize and you deserve far more appreciation than we show. THANK YOU.
Sunday the 29th is the last day to give to the Super Bowl Challenge, but we will continue to accept donations for clinical trials into January. I’ll be honest with you. I would LOVE to win the Super Bowl Challenge, earn a trip to Florida in the Winter, the experience of a lifetime and opportunity to share lung cancer’s story with that huge platform … but …
What really matters is that we pull together as a team to tackle lung cancer. What matters is that we rally together for better care for people affected by lung cancer. Clinical trials matter because they actually extend lives.
Anyone can get lung cancer. I am frequently contacted by people shocked and saddened by a diagnosis, whether their own or someone they love. Lung cancer affects almost everyone.
Research is changing the story & saving lives, so we need more research! I have a deep passion for driving change in this field and sadness that so far we have raised less than $1000.
It’s not too late to raise more money for lung cancer research!
It takes a #team to tackle lung cancer. Join us!
Would you please consider giving if you haven’t yet? Would you have family or friends who you might ask to give to this important cause? Please invite them. This is a good year end tax deductible investment. It could extend your own life or the life of someone you love.
It’s not too late to give to lung cancer clinical trials. Please give, #team!
What is the connection between geese and lung cancer research? Why did “research” immediately spring to mind for the Sixth Day of Giving to Lung Cancer Clinical Trials?
The connection is the goose that laid the golden eggs. That is research. It may not feel like it to some researchers working away in their lab, but it is true!
This is a fabulously exciting time in lung cancer research! New treatments are being approved and people are living longer and better. We are expanding the horizon of the possible.
LUNGevity put out a compelling video last month with stories from people directly affected by lung cancer clinical trials. The link is below. Please take three minutes to watch it. “In the last three years, the FDA has approved more lung cancer treatments than in the last three decades, thanks to clinical trial patients.” The survivor stories are gripping.
I’ve been to just a few of the many conferences where lung cancer research has been presented this year, and it is phenomenal! There is no rush quite like the realization that thousands of brilliant and dedicated people are working hard all over the world to find cures for people affected by cancer.
We are seeing success! The research is working! New treatments for lung cancer are being approved at record rate! People are living longer and better.
We’re not there yet.
Research keeps laying golden eggs. Let’s be generous in our support.
Research works. Research matters. People matter. We need more research.
If you were thinking about giving me a Christmas present this year, or making a tax-deductible end of year donation, please give to lung cancer research here. Thank you.
Click here to see the video It will open up to another page where you can click on the big picture to watch it. You can also see individual stories if you click on the smaller pictures below. It was an honour to be part of this project, because clinical trials matter. Thank you, Linda, Jack, LUNGevity and the whole team. You did a great job!
#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #ThankYou
Clinical trials mean life for people with lung cancer. They not only make a difference for people in the future. Clinical trials extend lives right now. Clinical trials matter!
Hope Matters. We all need hope, especially in hard times. Everyone goes through them, and in the midst of the darkness, hope is an act of defiance.
In Spring 2015, my health was bad. After a year and a half of first chemo then targeted therapy, I was weak and concerned that there might not be any more treatment options for me. My kids were 8, 11 and 14.
We were incredibly thankful for the clinical trial that my oncologist told me about. It brought hope, and I eagerly signed up. I wrote about it at the time, and here in An Act of Defiance, where I told the story of asking my family to plant an apple tree for me for my birthday in the Spring of 2015. The pear tree immediately brought to mind this story of hope.
Apple trees take years to bear fruit. Would I live to see it? Only one way to find out! Fast forward to 2019: we have harvested loads of apples and are very thankful I’m alive to enjoy them. Choose hope!
Hope is an act of defiance! When times are tough we can run low on hope. Hope matters. We need to nurture the hope within us, and when running low on hope, ask for help! #HopeMatters
That clinical trial kept me alive for over a year and a half, long enough for new and better treatment options to become available. I’m on my second treatment line since that clinical trial. I’m alive (and so very thankful) today because of grace and that clinical trial.
Research works. It is working to help give more and more people longer and better survivorship! Lung cancer research matters because people matter.
Four and a half years later I am filled with gratitude for that clinical trial and all who funded it, giving me the gift of extra years of life, such important years that I’ve cherished with my family and friends. My kids are now 12, 16 and 18. We’re incredibly grateful for these years.
Four and a half years later I know from the depth of my being that research matters. Four and a half years later I keep shouting from the rooftops: RESEARCH MATTERS!
I’m raising funds this month, posting these 12 days of giving to lung cancer clinical trials. Please give generously: your gift could mean years of life for someone like me, and what a difference that makes for so many!
To celebrate SiX years of lung cancer survivorship, please give generously to lung cancer research!
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!
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!
Six years and seven weeks ago, like many other parents of young children in the schoolyard that year, I had a cold with a cough which persisted.
Six years ago I was constantly coughing, and beginning to realize that the inhaler the doctor prescribed wasn’t working. I coughed so much I had to step down from the choir I had been rehearsing with to sing Messiah.
Six years ago we had started to suspect something was terribly wrong. I could hardly speak a sentence without coughing. When faced with a flight of stairs, I wondered if I could climb them.
We knew something was wrong, but had no idea it could be lung cancer. I started undergoing a myriad of tests, and when we finally got my diagnosis that December, it seemed impossible. When I learned I had advanced lung cancer I had no hope.
I did not know what to expect, but I never expected this: that six years later I am living life!
I had no idea I would still be alive six years later, never imagined I could be this alive and vibrant.
I never dreamed I would live this long.
Shortly after my diagnosis I read the research on Crizotinib, the first new targeted therapy pill my oncologist mentioned. I rejoiced that so many of the people on Crizotinib were still alive six months later. Six months seemed like such a long time, such a lot of opportunity to live, such a great gift for someone with lung cancer… and here I am, six years later.
Six years: chemo, Crizotinib, Clinical Trial: Ceritinib, Alectinib, Lorlatinib. Cutting edge new research keeping me alive these years. Every time the cancer outsmarted a med, a new treatment has been available – typically just in the nick of time – so very grateful! Research is giving me so many days to celebrate, gifts of countless moments, memories, milestones.
My children were 6, 10 and 12 when I was diagnosed. They have had a Mom right with them as they’ve grown these six years. My daughter is now 12, my sons 16 and 18. My oldest started University this Fall (Electrical Engineering and Physics, still living at home!). I’m still in the picture. I still get to talk with them, cook for them, hug them, encourage them, love them.
“Grateful” is only the beginning of how immensely thankful I am to be alive and living so well six years later. I thank God for lung cancer research and the difference it makes.
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.
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.
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.
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.
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.
So many great stories to tell, pictures to share, and blog posts yet to write! I’m feeling fantastic on my current med. I’m enjoying riding my bike. I’ve travelled three of the past five week-ends (all lung cancer related). I have loads of energy and I’m so very grateful.
#ResearchMatters #Hope #Grateful
On Saturday May 25, a fantastic group of lung cancer survivors, patients and friends are walking the 2K. It’s Ottawa Race Week-end, and we are joining in the celebration! “Lung Cancer Team Canada” is walking on behalf of all Canadians affected by lung cancer. We know that not everyone can walk, and we are walking to celebrate the fact that we can and to represent all who can’t.
If you can, we’d love for you join us! If you want to donate, we welcome that too. We are raising funds for Lung Cancer Canada, Canada’s only charitable organization devoted solely to Lung Cancer.
What I want most is for you to know that more research means more survivors and better survivorship! Please join in and celebrate the difference that lung cancer research makes. Cheer loudly for us, because we are lung cancer survivors, and we are strong!
We are also very grateful for our caring and hard-working #lungcancer team at The Ottawa Hospital. Dr. Paul Wheatley-Price, one of our terrific lung oncologists, is running the marathon for all Canadians affected by lung cancer on Sunday morning. Please join our group of lung cancer patients and survivors in watching for him and cheering loudly for him!!
On May 25, “Lung Cancer Team Canada” is walking 2K for all Canadians affected by lung cancer. We are #LungCancerStrong and we hope you will join us! Please walk with us, donate, and cheer for us! We welcome your support!!
Five years ago I was feeble and fragile, just finished my fifth round of chemotherapy, having coughed for months before diagnosis, still coughing because although chemo helped, it didn’t really help that much. Facebook just reminded me of that time with a photo of some of the many gorgeous flowers that beautiful people sent to us to encourage us, because we all need encouragement, especially when we are travelling rough places in our road.
I could hardly talk, couldn’t do much more than lie on the couch looking at beautiful flowers. I pushed myself hard, not wanting to give up one millimetre to lung cancer, but even so, those were difficult days. Some of my friends are going through hard times like this now. Those were hard days, because no matter how tough I was or how hard I pushed, lung cancer kept pushing harder, and chemo sure wasn’t doing the job.
Thankfully lung cancer research made a difference for me. I’ve been on a series of targeted therapy drugs for almost five years now, and they have been -not without side effects- better than chemotherapy.
I’m alive and well, and now I’m still fighting! I’m not fighting for my life at the moment, but I’m fighting for others, including those who have not yet been diagnosed.
I’m thankful that I’m not fighting alone. Here are a few of my terrific teammates gathered in Atlanta for the AACR Annual Conference:
Lung cancer research has been neglected, and I can’t understand why. New treatments are game changers, so let’s keep going and make a great life and death difference for more people! Let’s find new targeted therapies to work for more of the lung cancer patients. Let’s turn more patients into survivors!
Lung Cancer needs a little more love, and a lot more research money. More research money means more survivors. Look at me! I’m alive and I’m living life! I’m celebrating life every day because every day is a gift to be celebrated!
A bunch of us -lung cancer patients and others- are walking the Ottawa Race Week-end 2K this May 25. Come join us! We’re going to have a great time! We’re getting tee shirts! We’re just getting started! Stay tuned for more details, and sign up to join our team please! We are “Lung Cancer Team Canada”, and we’re raising $$ for Lung Cancer Canada. Here’s the link.
People matter. People with lung cancer matter. Lung Cancer #ResearchMatters . Tell everybody!