Canada

The Weekend, The Sens, and Guy Lafleur

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People are asking for updates, so it’s good to let you know that though there have been a rough few days, the weekend was a little bit better. It’s hard to believe it’s already Wednesday evening. A busy few days taking care of some important items on the to do list.

Another important health update: our awesome friend and neighbour, Chris, drove us to the Cancer Centre for blood work on Monday. Blood has been successfully drawn and sent off to be tested for some potential new circulating tumour DNA which might lead to a potential precision oncology treatment option. Now we wait. With hope.

Back to the week-end update!

The kids and I have had some very good conversations, and we spent time singing together on Saturday, with the middle child on the guitar. For years, a vocal chord has been paralyzed so it’s been challenging to speak, sing, etc. Lately it’s been gradually improving, and the past few days it’s noticeably better. Very thankful! Singing is nothing like it was before cancer, but it’s very good to have recently gotten back almost an octave and a half. So thankful.

Our wonderful church family brought three meals on Thursday, as they have been doing every chemo cycle for quite some time. For a long time before then, dear friends had been bringing food. We had asked for only one meal each three weeks, but suddenly realized that one meal wasn’t quite enough. That realization coincided with a call from one of the pastors asking if the church team could bring food for us. It made good sense (since our need had increased) to give our friends a break and switch to a bigger team. We are very grateful for the abundant generosity of our community.

Friends have been coming by with bagels, treats, additional meals, additional treats, additional bagels, additional treats, and more. We are blessed and appreciative. Thank you so much!

Here is a big treat from Sunday:

Canadian White Ribbon maker and fellow lung cancer survivor advocate, Lisa Weir came (from London Ontario) to visit us with her daughter Sam today. (Thank you to my first born for taking this picture.) The Weir family has made 400 White Ribbons – with love – as part of The White Ribbon Project. We have so much appreciation for them and others who have worked together as a good, kind, loving team to make and give out ribbons with love across Canada. Lisa has also been a great friend and strong supporter. She and Sam came with armloads of dinner for us. They are very kind and good, supportive friends. #grateful

This past year, Sam brought several armloads of ribbons from London to Ottawa to be distributed with love. She is awesome! Thank you, Sam. Sam is married to Josh Brown who plays for the Ottawa Senators. They are huge supporters of Lisa and others affected by lung cancer. Sam has also brought White Ribbons for the Sens to sign. Some have already been given (with love) to lung cancer survivors. Dr. Paul Wheatley-Price is coming by this week to pick up more to be given out to people diagnosed with lung cancer. #thankful

Ribbons made with love by the Weir family were given to Hockey Legend Guy Lafleur who is a powerful advocate for people affected by lung cancer. The Weir family had sent a bundle of ribbons to Robert and Melina in Montreal so they could give them out with love there. Seeing how Guy Lafleur (who had been diagnosed with lung cancer) was advocating for research motivated our team to get him a White Ribbon to express our appreciation for his good work. Reached out to Dr. Normand Blais at CHUM (we’ve both been part of Canadian Cancer Trials Group Lung Executive). Dr. Blais connected with M. Lafleur’s team and worked to make it happen. Robert and Melina brought White Ribbons to Dr. Blais who took them into the Cancer Centre. Here are the pictures. (Dr. Blais is on the right.)

François Morin, Mustapha Tehfe, Guy Lafleur, Marilyn Lefebvre, Normand Blais.

Many of you know that Canada is a bilingual nation, with 20-25% of Canadians speaking French as their first language, including people pictured above. The White Ribbon Project is an international movement, and right from early days we discussed how important it is to make ribbon labels in local languages, and how we could best do this. The reason language matters is because language is love and The White Ribbon Project highly values love. We really wanted to make ribbon labels in French. We were not able to make it happen in time for this photo shoot above, but at the Ottawa community build in August 2021 we made the first French ribbons, many of which have been given with love. (Since then, Ribbons in other languages have also been made and given with love.) Here are some Ottawa build pictures from August.

Together We Make a Difference

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A huge thank you to all you wonderful people who wrote letters, called and/or emailed for people with ROS1 to get access to Crizotinib. I asked you in a blog post on September 13, 2020, to write officials requesting for Crizotinib to be added to the formulary for people with ROS1 lung cancer. I heard from over 30 of you who took the time to help save lives. Thank you! Together with all the other people who communicated, our voices were heard and Crizotinib was approved! Together we make a difference!

This is wonderful news for so many people, including B. who dropped by to chat and pick up two The White Ribbon Project ribbons today. She was diagnosed fairly recently with ROS1 lung cancer and is taking Crizotinib. She’s a lovely person with a family and strong support community who love her. It meant so much to give her two ribbons with love: one for her and one for her to give to a supportive friend.

Thank you to Bill and Lisa Weir, Canadians who make each ribbon with love and give each ribbon with love. Following the lead of Heidi Nafman Onda and Pierre Onda , making and giving ribbons with love. Thank you Lisa Weir and Bill Weir for working with care, ensuring that each ribbon is exactly like the originals. Same measurements, same materials, same fonts, same stickers. Strength in uniformity. Love in every single detail. #thewhiteribbonproject bringing people together, reminding us we’re not alone. #love #team

#thewhiteribbonproject #inclusive #supportive #anyonecangetlungcancer

Thank you!

Made in Canada with Love

A pill can turn a life around

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I’m alive because I take daily cancer-fighting pills. Would you give 10 minutes to help people live? Please send an email asking for funding for a lung cancer pill. I put the email I sent below for an example, so it’s very fast & easy for you to cut and paste it and make it your own. Details below!

Let me tell you about my friend Patty Watkins. In 2014, Patty was in excellent shape. Her son’s graduation was just around the corner and she was looking forward to it. One day she experienced a burning feeling in her leg, so went in to get it checked. She awoke after surgery to learn that she had lung cancer and only a couple of days to live. “You’ll never take Patty home,” the doctor told her husband. They called their children to come so they could say their goodbyes.

Patty was determined to live long enough to attend her son’s graduation. Biomarker testing revealed that Patty had ROS1, a rare kind of lung cancer which is treatable with a pill called Crizotinib.

That turned Patty’s story completely around! Patty is alive today because she takes daily cancer-fighting pills!

Patty lives every day. She is a powerhouse! Here are some of the things she has done while on Crizotinib…

Patty rode a camel, was baptised in the River Jordan, floated in the Dead Sea, went to Paris (and when her hotel was under siege during the Paris attacks, she crawled to the hotel basement on her belly!), saw her daughter marry, celebrated her & her best friend’s 60th with a White House tour, and walked many 5K’s for lung cancer research!

Patty rappelled down a 20 story building to raise money for research! Way to go, Patty!

All this because she was tested, and treated for ROS1 lung cancer with Crizotinib! Patty Watkins is alive and well today thanks to Crizotinib! She’s also now a grandmother, and loves spending time with her cute grandson!

In many places, doctors don’t test for ROS1 lung cancer, so people are dying not even knowing there are pills they can take to fight their cancer. People don’t always get the opportunity to live like Patty does.

In Canada, some hospitals test for ROS1 and some don’t. Some provinces fund Crizotinib and some don’t. We are working for change!

Right now, I’m asking for your help to get our province (Ontario) to listen and start funding Crizotinib for people who have ROS1 lung cancer. Would you please support this important work through social media, and/or sending an email. Below, for an example, is the email I sent. Feel free to adapt it to suit you. You don’t have to live in Ontario to help, but if you do live in Ontario, please mention where you live, and if you are emailing your MPP, please indicate they are your MPP and include your address.

This is a grass roots movement supported by some people with ROS1 lung cancer (including Christine Wu), other advocates (including MaryAnn Bradley and Andrea Redway), and Lung Cancer Canada. LCC and several oncologists have sent a request letter, the link is in the email below. Together our voices amplify this message, and will help people get cancer-fighting pills to help them live longer and better, like Patty.

Dear Hon. Christine Elliott, Minister of Health,

I am a lung cancer survivor who lives in Ottawa and is treated at The Ottawa Hospital. I would like to request a meeting to discuss the funding of Crizotinib for ROS 1 lung cancer patients and survivors in Ontario. 

I was diagnosed with stage 4 lung cancer in 2013, and I know first hand the difference Crizotinib can make. After chemotherapy, Crizotinib offered much better quality of life along with the freedom to take it at home. Crizotinib kept me alive long enough for other treatments to become available which have kept me alive to experience milestones like my three children all becoming teenagers, and my eldest starting University.

It matters to me that all others who could benefit from Crizotinib be given the opportunity to live longer and better.

Some facts:

  • Crizotinib for ROS 1 received NOC November 2017 
  • It received a positive PCODR recommendation June 7 2019. 
  • The PCPA (pricing) negotiations are complete.  
  • Provinces across the country have started to cover it including BC, SK, QB, NL, NB. 
  • It fits in with provincial pandemic plans (including ONTARIO) to keep patients out of hospital as it is an oral take home medication. 


This drug is vitally needed as a treatment for ROS1 positive lung cancer patients. Here is a link to a letter from Lung Cancer Canada written in June 2020 to Angie Wong, which outlines the case for funding.  To date, there has been no response. 

https://www.lungcancercanada.ca/LungCancerCanada/media/Images/Crizotinib-for-Ros-1-ON-FINAL.pdf


I look forward to hearing from your office and discussing this issue with you.

Warm regards,
Jill 

Jill Hamer-Wilson  BEng, BEd, MTS      

613-325-5695

www.ThroughtheValley.ca

Lung Cancer Survivor Advocate

Canadalung@gmail.com

Please send an email to the Ontario Minister of Health, the Honourable Christine Elliott christine.elliott@pc.ola.org, and also cc me canadalung@gmail.com.

Please don’t hesitate to reach out if you have any questions, concerns or comments.

I addressed this email to the Minister of Health, and cc’d in France Gélinas, (NDP Health Critic), John Fraser (Liberal Health Critic), Karen Hughes (Deputy Minister), and Robin Martin (Parliamentary Assistant). I also sent personalised emails to several others, including my own Member of Provincial Parliament. (Email addresses: christine.elliott@pc.ola.org fgelinas-qp@ndp.on.ca karen.hughes@ontario.ca jfraser.mpp.co@liberal.ola.org)

If you live in Ontario, please also email your local MPP and mention your address so they know they represent you. It’s easy to find your MPP:  https://www.ola.org/en/members/current

Please cc me: canadalung@gmail.com

Please also reach out to the Health Minister on social media if you are able.

Twitter: https://twitter.com/celliottability?s=21

Facebook:https://www.facebook.com/ChristineElliottON/

Instagram: https://instagram.com/celliottability?igshid=157mo9u4heruz

Please tag me, and include #HOPEUNiTES Thank you!

THANK YOU SO MUCH!!! I am very grateful that you are doing this! I love Patty and others with ROS1 lung cancer, and I very much want all to live longer and better with Crizotinib. Your participation means a great deal.

  • Patty Watkins and me at LUNGevity’s 2019 Summit

A pill can turn a life around. Thank you for acting to turn people’s lives around.

SiX Years!

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To celebrate SiX years of lung cancer survivorship, we are fundraising for lung cancer research! This is such an important cause because anyone can get lung cancer, even active moms of young children.

Join Team Jill to celebrate survivorship!

Lung cancer is the deadliest cancer by far, yet in Canada it gets less than 0.1% of all cancer donations from individuals and businesses.

Join Team Jill to celebrate survivorship and change that statistic!

This year, Team Jill is entering the 2020 Lung Cancer Survivors Super Bowl Challenge, raising funds for lung cancer research. Please join in and celebrate survivorship by supporting Team Jill!

Support Team Jill by:

  • making a generous donation
  • asking friends and family to donate
  • inviting Jill to speak at your workplace, community group or living room gathering
  • asking your colleagues to donate to lung cancer research
  • holding a bake sale or other fundraiser
  • sharing on social media
  • brainstorming ideas and acting on one or more
  • talking with Jill about your ideas, and working on them together

Team Jill’s page:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

Team Jill’s page for Canadian income tax receipts: http://donate.ottawacancer.ca/goto/jill

Support Team Jill now, because this special window is only open until December 29! We are entering the Super Bowl Challenge to raise funds for lung cancer research. This unique fundraiser gives lung cancer survivor-advocates the opportunity to compete against each other to raise funds for lung cancer awareness and cutting edge research. The top three fundraisers earn trips to Florida for the Super Bowl, Pro Bowl, and Taste of the NFL, but the real winner is the people (who may not have been diagnosed yet) who will benefit from the research.

People affected by lung cancer live with a sense of urgency! Lung cancer doesn’t wait. Join Team Jill now!

“This is a fight we can win, but it takes at team to tackle cancer, and we need your help,” says Chris Draft (of Team Draft & the Super Bowl Challenge).  Will you choose to stand up for your community?

Ottawa has a strong history of people standing up publicly to fundraise for lung cancer (many of whom are pictured above), but this is rare across Canada. I know of some and would love to hear of other efforts across Canada!

Stand up and support lung cancer research by supporting Team Jill now!

Thank you!

#ResearchMatters

Team Jill has chosen the Ottawa Regional Cancer Foundation as beneficiary for this year’s Super Bowl Challenge. 90% of funds raised will go to lung cancer clinical trials through the ORCF, provided we raise a minimum of $5000. USD.

The Super Bowl Challenge is a great opportunity to raise lung cancer funds and also potentially earn the experience of a lifetime, and speak about the importance of lung cancer on one gigantic international platform. Thank you, Team Draft and the NFL for this tremendous opportunity! Team Draft is an initiative of the Chris Draft Family Foundation dedicated to increasing lung cancer awareness and research funding; more information below. 

Team Draft’s Press Release:

For Immediate Release

December 3, 2019

Contact:  Randall Hawkins, rhawkins@chrisdraft.org

Team Draft Marks Giving Tuesday With A Call To Support Sixth Annual Lung Cancer Survivors’ Super Bowl Challenge

 (ATLANTA, GA) – Today is Giving Tuesday—a day designed to unleash the power of people to change their communities by supporting the organizations they care about.  On this Giving Tuesday, Team Draft is challenging people to help change the face of lung cancer by supporting its 6th Annual Lung Cancer Survivors’ Super Bowl Challenge.  This one-of-kind fund raising challenge gives lung cancer “survivor-advocates” the opportunity to compete to against each other to raise funds for critical public awareness of this often misunderstood disease and for cutting-edge research that is giving new hope to those battling it.  The top three fundraisers, announced on December 30, 2019, will earn trips to the Super Bowl in Miami, the Pro Bowl in Orlando, and the 29th Taste Of The NFL, an exclusive food and wine festival held in Miami the night before the big game where guests will savor dishes prepared by some of the top chefs in the country while rubbing shoulders with legendary players from all 32 NFL teams.

Team Draft was founded by former NFL linebacker and internationally-recognized health advocate Chris Draft and his late wife Keasha on November 27, 2011—their wedding day.  At the time, Keasha, a never-smoker, was battling Stage IV Lung Cancer after being diagnosed with the disease in December 2010.  Despite the diagnosis and knowing the long odds they faced, Chris and Keasha decided to fight back, and standing side-by-side, they launched Team Draft at their wedding.  Keasha died one month later.  

Since its founding, Team Draft has been dedicated to using its unique platform to raise lung cancer awareness and research funding through its Campaign To Change The Face Of Lung Cancer.  And the centerpiece of that Campaign is Team Draft’s annual Lung Cancer Survivors’ Super Bowl Challenge.  As Draft explains, “the Super Bowl Challenge gives us a unique opportunity to use the overwhelming media coverage surrounding the Super Bowl to raise lung cancer awareness on an international level.”

Team Draft’s efforts are paying off.  “The Challenge achieves some amazing things in terms of public awareness and changing perceptions about lung cancer,” says Dr. Ross Camidge, Director of Thoracic Oncology at Colorado University Cancer Center.

By giving survivor-advocates like Gina Hollenbeck, one of last year’s Challenge winners, a world-wide platform to share their stories, Team Draft is weaving a broader narrative about the true nature of lung cancer and the hope that now exists for survivors.  As Gina put it last year, “I am super excited about this opportunity to go to the Super Bowl with my husband, but I am even more excited to give lung cancer a voice”—a sentiment echoed by Jeff Meckstorth, another past winner.  “In many ways,” says Jeff, the Super Bowl Challenge is “a once and a lifetime opportunity to thank our community, fight for all lung cancer families, but most importantly to educate the public about the reality of lung cancer.”

In addition to raising critical public awareness, the Super Bowl Challenge also raises funds for lung cancer organizations and treatment centers across North America.  And because Team Draft’s National Campaign has always been about “we” and not “me,” just as Keasha intended, participating survivor-advocates who raise more than $5,000 during the Super Bowl Challenge may commit 90% of the funds they raise to a lung cancer organization or cancer center of their choice with the remaining 10% going to support Team Draft and its mission.  Of this aspect of the Super Bowl Challenge, Dr. Camidge says, “you need somebody working on the national level.  You need somebody working on the local level.  Everybody wins.”  

As Draft points out, “anybody can get lung cancer.”  “The disease doesn’t care where you live, but your zip code often determines the quality of care you receive,” he explains.  “In football, we understand the importance of the home field advantage.  By allowing survivors to direct where funds go, we’re giving people the opportunity to fight for better cancer treatment in their communities—to give themselves and their neighbors the home field advantage,” he says.  

But for the competing survivor-advocates, the Super Bowl Challenge is so much more than a fundraiser.  “Team Draft has really helped boost our family’s spirits during this challenging time,” says Dr. Lucy Kalanithi.  In 2015, Lucy and her husband, Dr. Paul Kalanithi, won Team Draft’s inaugural Super Bowl Challenge and were able to join Team Draft in Phoenix for Super Bowl 49.  Paul went on to write the bestselling memoir When Breath Becomes Air—a powerful and moving chronical of his life and lung cancer journey—before passing away at the age of 37.

While Team Draft hopes to have survivor-advocates from all 32 NFL cities participate in the Super Bowl Challenge, the ultimate goal is for all NCI designated cancer centers and lung cancer organizations—regardless of location—to identify and support a survivor-advocate in the Challenge every year.  “We know the key to winning this fight is for everybody in the lung cancer community to support one another,” says Draft, adding that “the only way a community or an organization loses is if nobody stands up.” 

On this #GivingTuesday, Team Draft is challenge everybody to make the choice to fight for their communities by joining the Campaign To Change The Face Of Lung Cancer by donating to the Chris Draft Family Foundation at www.chrisdraftfamilyfoundation.org or supporting a participating survivor-advocate in the Super Bowl Challenge at https://www.crowdrise.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge.  

“This is a fight we can win, but it takes at team to tackle cancer, and we need your help,” Draft says.  Will you choose to stand up for your community?

About Team Draft

Team Draft is an initiative of the Chris Draft Family Foundation dedicated to increasing lung cancer awareness and research funding.  To learn more or to donate, visit www.teamdraft.org.

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Fundraising for lung cancer research in Canada.

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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.

  • Advocates at World Conference on Lung Cancer 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

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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.

  • Evening receptions were opportunities to spend time with stellar people
  • Beautiful Atlanta

This is Hope!

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LUNGevity’s summits have made a huge difference for me. I’ve deeply connected with my lung cancer family, my silver linings. I’ve learned about new research, and my hope has grown tremendously.

Being at this conference has been incredibly inspiring, and I would love to go again this year. I want to be there to represent Canada, and be a supportive presence for all who are there. I also want to get a booster shot of hope and bring back news of exciting research and great stories to share with Canadians (and others) affected by lung cancer. I know I’d come back a better advocate.

If I can raise $1500 or more in donations, LUNGevity will cover my travel expenses, including airfare and hotel accommodations.

Many of you were so generous for the Super Bowl Challenge, and I’m thankful! I wouldn’t want anyone to feel pressure, but if you’re able to help me get to this year’s summit, I’d be grateful.

Here’s the link:Jill’s LUNGevity Summit Fundraising Page

Deadline is March 15!

LUNGevity earned a 4-star rating (the highest rating) from Charity Navigator again this year. You can read more about that here.

Two of my Ottawa lung cancer sisters are coming to the summit this year, maybe more! Others are coming from elsewhere in Canada. It would be strategic, and so good to spend time with them!

LUNGevity’s summits have been getting growing numbers of people affected by lung cancer from around the world, so this year it’s “The International Lung Cancer Survivorship Conference”. I’m going to represent Canada and I look forward to spending time there with some of the Canadian lung cancer advocates that I try to encourage regularly.

Click here for Jill’s LUNGevity Summit Fundraising Page

Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.

In the Bleak Midwinter

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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.