Tag Archives: PMC

Diane Legg and the PMC

My friend Diane, a firecracker of a fundraiser for lung cancer, is having to make some adjustments this year due to the pandemic. She sent out this letter to her friends and supporters and I asked her permission to reprint it. Please consider helping her in this quest! xo

Dear Friends & Family, I hope this email finds you well and safe! What a crazy time we are currently living. I don’t think any of us expected to experience a pandemic like this in our lifetimes. As I write, I am “sequestered” at our home in Maine. I’ve been in Maine for over 12 weeks. The first eight weeks I was by myself (well I did have Ziggy, our dog with me). Dean came up for weeks 8 & 9 but he had to go back to Boston on Memorial Day, as his work from home was winding down. Cole and Will joined me week 10 and are with me for the remainder of the summer. Dave continues to go to work every day as Charm Sciences is an essential business. We’re trying to figure out how best to keep me “safe” but still allow he and Dean to visit us in Maine periodically.
Like so many things in our lives right now, things are uncertain. Many activities and events that we participate in are on hold, postponed, or canceled for the time being. Our annual Pan Mass Challenge (PMC), an annual bike-a-thon across Massachusetts, benefiting lung cancer research at Dana Farber Cancer Institute (DFCI), is no different. Usually the first week of August, Dave & I join more than 6700 cyclists and 4000 volunteers to raise money for life-saving cancer research and treatment at Dana Farber. This was to be Dave’s 12th PMC and my 9th. This year the PMC is being “re-imagined”, and both Dave and I are trying to figure how that is going to look for us.
Riding in large groups is not going to be an option for us this year. Dave is planning a Pan-Mass ride with some fellow teammates but is looking at perhaps a northern route rather than the typical southern one…they are still figuring out the logistics. The good news is, if the weather doesn’t look good the first weekend of August, they can choose a different weekend. I may join them for a leg or two of their ride but again will depend on what’s happening in our world at that time – for me riding in any group may not be an option.
So what will I do? I have been inspired by a story about another Stage IV lung cancer fighter, Isabella de la Houssaye, who just completed a cross country cycling trip from San Diego, CA to St Augustine, FL … that wasn’t quite enough so she added an additional leg from FL to Washington DC….all to raise awareness about lung cancer. You can read her story here: https://ridewithgps.com/journal/4698-user-spotlight-isabella-de-la-houssaye?otu= and on her website http://www.bikebreathebelieve.org. I’ve decided since there will be no actual PMC this year, I am going to do my own “virtual” cross country ride using my Peloton and road bike…3,000 miles by year end…hopefully much sooner than that!! I will keep you abreast of my progress via social media!
Our mission at LUNGSTRONG is to raise funds for innovative research so that lung cancer is a treatable disease and no longer fatal. 100% of the money that Team LUNGSTRONG raises goes towards much needed Lung Cancer Research under the direction of Dr. Pasi Janne, Director of the Lowe Center of Thoracic Research at DFCI. Dana Farber has been leading the way in lung cancer research and we know that the money that Team LUNGSTRONG raises is helping them find a cure. In the last 10 years, Team LUNGSTRONG has raised close to $3.5 Million!! Dr. Janne has used the money we raised to support a number of his junior investigators to fund development projects and “out of the box” research. To date, we’ve helped fund Dr. Oxnard’s work in circulating cancer cells, Dr. Ozers work in small cell lung cancer, and this year Dr. Cheng’s work on genetic changes in blood from immunotherapy. In addition, the money we raise is funding some of the research data specialists at DFCI that are working on the correlative science – looking at markers in tissue and blood samples. I’ve attached a letter from Dr. Janne that outlines the specific work that LUNGSTRONG has funded so you if you are interested in it, you can read the details. The bottom line is, the work that we are funding is truly making a difference in the fight against lung cancer. Our goal this year for our team of close to 90 riders, is to raise $500,000, Dave and I hope to raise $20,000 together.
Due to the current economic situation, the PMC has waived all fundraising minimums but this does not mean that the need for cancer research is less important. In fact funding cancer research is even more critical and funding lung cancer remains crucial to changing the face of this disease. We recognize that these are hard and uncertain times, if you are interested and able to support our ride you can do so by sending us a check, payable to PMC, or to donate on-line go to: http://www2.pmc.org/profile/DL0173 or http://www2.pmc.org/profile/DL0113. No donation is too small and if you are unable to donate – no worries, we appreciate all of the thoughts and prayers you send our way! Also, it doesn’t matter whose link you donate to…we share between us!!
Every day I feel incredibly blessed that I am still here and that I’m living well with Stage IV lung cancer, but this is not the norm. It’s been 2 1/2 years that I have been on this clinical trial. Currently, the standard of care, for my type of lung cancer, works on average for 19 months before becoming resistant. The clinical trial that I am on is specifically to see if this combination of drugs will give patients a longer time period before becoming resistant. This week my scans showed that my cancer continues to be stable, so this clinical trial is doing what we hoped it would. I want others to have this same opportunity.
Today only 18% of the people diagnosed with lung cancer live more than 5 years. It’s our dream that one day lung cancer will be treated as a chronic disease not a terminal one! We want to be a part of changing the stigma and to reverse the statistics!
Dana Farber is a leader in innovative lung cancer research and is working diligently to find a cure. There has been more progress in lung cancer research in the past 5 years than there has been in the last 30 years! We are blessed to live so close to Boston and to have this kind of care accessible to us. We are very excited to be part of a team that will continue to support this critical work, giving us the hope that we need.
I know that many people have been adversely affected by covid-19 and the pandemic. Know we are thinking of you and hope that you and your family are well and safe. We both feel extremely blessed for the support that our families and friends give us year after year, both emotionally and monetarily.
Many thanks for your continued love and support of our family,
Diane & David Legg
2 Main Street #735, Harrison, ME 04040
PS – Donations are tax deductible and 100% will go to the Dana Farber Cancer Institute. If your employer has a matching gift program, ask your Human Resource department for a form and follow the process for matches. To learn more about the PMC, visit http://www.pmc.org.
PSS – Please feel free to forward this email to you friends and family!!

Spotlight on an advocate: Day 13

*In November (the month dedicated to lung cancer awareness), bloggers are highlighting a different advocate everyday. My first post is about Diane Legg and it is on Day 13.

It was March of 2006. Dana Reeves had just died and I was reeling. As a young woman with lung cancer, I’d hitched my star to Dana’s, and her loss felt terribly personal. But then I happened to pick up a copy of the Newburyport Daily News. Inside was a story about a young mother of three with lung cancer; Diane Legg. I found her phone number online and called her that afternoon. We chatted a couple more times but our plans to have coffee somehow never materialized.

Diane Legg and Hildy Grossman: two super advocates!

Diane Legg and Hildy Grossman: two super advocates!

In 2008 my path and Diane’s crossed once again. I was attending Lung Cancer Alliance’s annual Shine a Light on Lung Cancer at the Prudential Center in Boston because my trial buddy Kevin Brumett was speaking—Kevin and I were early participants in the first clinical trial for an ALK inhibitor. Well, as a co-chairperson, Diane was there too and we finally got to meet. And the rest, as they say, is history.

I treasure Diane as a close friend but also as an inspiration; the first person I saw a little further down this path than myself.

Diane was only 42 when she was diagnosed with NSCLC. She’d strained a muscle while picking up her one year old and when the pain didn’t go away, she was scanned to rule out a pulmonary embolism. What they found instead was lung cancer.

The fact that Diane has lung cancer is not the reason she became a passionate advocate. Instead it was the death of a close family friend who had been diagnosed at the age of 43 just a few months prior to Diane. Devastated by how quickly her friend passed, Diane was galvanized into action: “I turned her loss into advocacy.”

Her first act of advocacy was to become co-chair of the Massachusetts chapter of the Lung Cancer Alliance. All those Shine A Light on Lung Cancer events? That was Diane’s brainchild. She also teamed with her husband Dave to form TeamLUNGStrong, part of the annual Pan-Mass Challenge. Monies that they raise are earmarked for lung cancer research at Dana Farber and Massachusetts General Hospital. Despite the fact that her cancer is now advanced Diane herself rides in the PMC (amazing, truly amazing).

I asked this mother of three and super advocate what motivates her. She responded very matter of factly that ‘you don’t have a choice, you just go on–everyday is a gift.’ And then I wondered what she would want if she could have anything in the world. Her answer? ‘Not to worry.’

Fitting somehow that this post is going up on Friday the 13th. Diane and I both had some really bad luck; non-smokers diagnosed with lung cancer at a young age. However, we also know when to count our blessings. More than a decade after diagnosis we’re still here. Through this journey we have had experiences and forged relationships that have helped make the unbearable bearable. Diane, I am grateful for all you do on behalf of everyone with lung cancer. And I am oh so proud to be your friend. ❤

#lcsm  #LCAM