The Exon 20 Group mourns the passing of Kevin M. Hanlon, our Founder, Chairman, and driving force to conquer EGFR and HER2 exon 20 insertions and conveys our deepest sympathies to Kevin's wife Denise and their children Lilly, Mark, and Ellrose.

Kevin was a daily inspiration for us since February 2017. Within weeks of coming to ICAN, it became clear that there was no central working group on rare exon 20 insertions. So right away, Kevin and his brother Robert T. Hanlon, PhD founded the Exon 20 Group at ICAN. The group features a multi-stakeholder international coalition of hundreds of leading thoracic oncologists,molecular pathologists, biologists, medicinal chemists, pharmaceutical companies and biotechs, special advisors and advocates, patients, caregivers and patient families that are part of the exon 20 therapeutic space.

Kevin waged his battle against EGFR exon 20 insertion with tremendous insight and a thirst to know all the options and sequencing of therapies at each pivot point. Kevin was truly a force of nature and was always concerned first and foremost about others in the exon 20 battle. He served as a steady stream of referrals of lung cancer and non-lung cancer cases to ICAN based on people he would meet who had just been diagnosed or who had just found out about new metastasis.

A natural friendraiser, he made many friends among the EGFR and HER2 exon 20 patients in the Exon 20 Group, hosting conference calls and so generously funding major grants. Bob was his tireless and daily advocate throughout the journey, from the day of diagnosis to Kevin's death.

The path will be much easier for exon 20 patients going forward based on the pioneering work and contributions of Kevin Hanlon. Kevin wanted to see the Exon 20 Group be the "command post" for one on one direct patient navigation of patient cases as well as the central repository funding and monitoring cutting-edge research.

No matter what Kevin was going through, he had stores of energy that were astounding. He prioritized family first and was devoted to his beautiful wife Denise, and three accomplished children. He kept very physically active throughout, and he was boating in the Adirondacks just one week before his death. He maintained a grueling business travel schedule, visiting with grateful clients and vendors across the United States. He inspired great loyalty among his employees at ComSource, Inc. in Manlius, New York. Kevin was genuinely interested in everyone he met, and his empathy and drive to see everyone succeed or get better was legendary.

Kevin was the real deal. Those who knew him find it hard to believe he is no longer with us. His funeral service was standing room only with more than a thousand people paying tribute. We want to share with you the beautiful eulogies as well as a letter that Kevin wrote to his eldest daughter Lily.

—Marcia K. Horn
President and CEO
ICAN, International Cancer Advocacy Network
Director, the Exon 20 Group

---

Eulogy to Kevin from Michael Beacham

Denise, thank you for the privilege of sharing my thoughts and insights on Kevin at this sad time.  Lilly, Mark, and Ellrose, please know that you will stay in our prayers.  Tom, Bobby, Margaret, in-laws, cousins, nieces and nephews, we grieve with you.  Kevin’s passing is a loss for all gathered here.  But that’s not where Kevin would have us focus.  Scan this congregation.  See the faces of friends, colleagues, and associates.  Look at the people with whom you have a friendship because Kevin brought us together.

Kevin Mark Hanlon was born in Syracuse on December 21st, 1956 to Jane and Don Hanlon.  He was preceded by Tom and followed by Bobby and Margaret.  The Hanlons settled in the Fayetteville neighborhood of Brookside in the early 1960’s.  Kevin’s childhood included typical neighborhood play of sandlot football, bike riding, adventures at the nearby Freitag farm, and various explorations in the wilderness separating Brookside from Round Lake and Green Lakes State Park.

Kevin’s boundless energy and creative mind probably made him an interesting son to raise. Jane Hanlon likely had a different view of Kevin than most of us. But for several years, Kevin has been a devoted son participating in his mother’s care decisions and spending time with her on a regular basis…just because you ought to. 

Formal sports found Kevin excelling at football and track and field where he specialized in the 880.  He was an above average student, but not way above average.  His selection as class king for the FM class of 1975 was a testament to his popularity. 

Kevin graduated from the University of Vermont in December 1979, and later picked up an MBA from Syracuse University.   Kevin held various sales and management positions including ComDoc and CIS corporations.  In 1989 he co-founded ComSource which recently celebrated its 30th Anniversary.

One of Kevin’s dreams coming true was finding a lot and building a cabin on Big Moose Lake in the Adirondack Park.   He also had homes built in Verbeck and Mallards Landing always applying a careful eye to details of the blue print layout and construction.

Kevin lived in good homes, vacationed in nice places, wore fine clothes, drove valuable cars and boats, drank from the top shelf, and chose wines from the favored wine cellar shelves.  He was class all the way.  Kevin had memberships at nice places like the Cavalry Club and Berkely Hall in Georgia.  He had the best golf equipment money could buy and took many lessons.  I don’t think he broke 90 more than a handful of times.  Nonetheless every time he played, and no matter with whom he was playing, he’d insist on a wager.  Then he’d inflate his handicap index to improve his chances of winning.  But while golf may have been one of the few things he did not do well, Kevin had a hole in one at Lyndon as a teenager and more recently had holes in one on number 6 at Inlet and number 3 at Cavalry.  Three holes in one as a lousy golfer…that’s Kevin!

So much life packed into 62 short years.  When it came to adventure and recreation, no one did it better than Kevin.  The outings he conjured up were voluminous and amazing.  Kevin was an avid outdoorsman and orchestrated multiple hiking, canoeing, and camping trips for family, friends, and business associates alike.  With Denise and the kids, the household head lead many ambitious outings, luckily below the radar Child Protective Services.

Kevin loved to tell the story of the rather young Ellrose stopping on the trail to tell her Dad, “I got about this much left in the tank!”  Lily, Mark and Ellrose may now boast membership in the Adirondack 46er club….thanks to their father.  W Don and the Hanlon sons had several memorable trips.  Kevin made the special efforts with his father to enter him in various Senior Games with Don even collecting medals into his 90’s, luckily below the radar of Parent Protective Services.

As a sixteen year old he lead four of us on a bike ride from Fayetteville to Old Forge.  The annual extreme days of adventure in which some collection of Friends of Kevin swam, hiked, biked, paddle boarded, and more brought so many of us together, albeit ill-advisedly!  I understand that in more recent years, he lead ski trips involving helicopter and cat transportation to virgin slopes in British Columbia.

Kevin was a star to which so many hitched their wagon.  He thrived on including people in his wide ranging endeavors.  I don’t have particulars, but I believe that with Kevin’s leadership, ComSource has a vast network of corporate and business relationships of mutual benefit.

The FM Sports Booster club benefited from Kevin’s participation in the Turf Field initiative.  Boy Scout Troop 152, where Kevin secured Eagle Scout status, has been a beneficiary of Kevin’s support in the last few years.  He had the idea to recruit cub scouts so as to make a steady flow of kids into Boy Scouts.  A real visionary.  This year Kevin had the proud experience of seeing his favorite recruit complete the requirements for Eagle Scout.  Congratulations, Mark Hanlon.

I so cherish the good times with Kevin, actually all times with Kevin were good.  I recognize and accept that the reason I don’t have more memories with him is because he was making memories with one or several of you.  Take a moment.  Consider just one memorable experience you had because your path crossed Kevin’s path.  A sight you saw, trail you hiked or biked, a slope you skied, a boat ride you took, a mountain you climbed, or a deal you closed. We all have them…fond recollections thanks to Kevin. 

One memory for me was in August 2016 when I tagged along on Ellrose’s summit of White Face and Esther mountains.  Kevin lead Ellrose, three friends, and two of the friends’ mothers on the full day hike.  Kevin had climbed these high peaks before, he didn’t need them, but for us, he made the effort.  His encouragement was particularly useful as a thunderstorm approached towards the end of the hike and we had to step up our game…or else.

Another example of Kevin’s taking folks to a new level.  As a high school senior in 1975, Kevin set the goal for the FM track team to beat Baldwinsville with its unbeaten record over the previous few years.  B’ville had superstar runner Don Paige who went on to world class competitions.

In addition to recruiting FM athletes from other sports onto the track team, Kevin attended B’ville track meets scouting for weaknesses.  He worked with the FM coaches to identify in which events FM could score points.  Let Paige have his 880 and mile victories, we’ll focus on points from other events.  So, with football players shot putting and soccer players high jumping and a strong four by four relay team, FM won the meet handing B’ville it’s first loss in a while.

One Sunday in April 2016, I found Kevin on a lawn tractor in the woods trailering wood chips.  He was with half a dozen Troop 152 scouts doing the community service of trail repair, again giving of himself.  A few days after that he and Denise began meeting with some specialists to discuss options for his lung troubles.  A lot has happened in the three years and three months since then.  Until recently, if you didn’t know Kevin was sick, his manner and attitude and looks wouldn’t tell you he was sick.

Last year, daughter Lilly and he participated in the Dana Farber Pan Mass fundraising ride…84 miles.  He travelled, worked, exercised and socialized.  Kevin waged a hearty battle to improve his medical condition while living life.

Ever the relationship builder, Kevin connected with research groups and advocacy organizations to minimize the crippling impact of his rare affliction on his day to day activities.  Dana Farber and MD Anderson participated in Kevin’s care and he received considerable counsel from Marcia Horn at the International Cancer Advocacy Network.  With ICAN direction, Kevin and Bob founded the Exon 20 Group to accelerate the drug pipeline and focus research on diseases like Kevin’s.

Closer to home, Kevin was the beneficiary of treatment help and advice from Colleen Zogby and Tracy Stauffer.  Bobby Hanlon was ever on hand to research and translate options as they surfaced along the way.  Margaret Hanlon served formidably as spiritual advocate.   At home, Denise and the kids no doubt brought joy and love to Kevin.  Countless others kept in touch with Kevin face to face, on the phone, and through other means.  You know who you are and I’m sure Kevin appreciated all of it.

Immaculate Conception Church.  Kevin’s been a member here for a long, long time.  He never wore his faith on his sleeve, but neither was he guarded about his Roman Catholicism.  In the last few years, he has learned, explored, and practiced new facets of spiritual growth.  This early ticket to heaven is likely not the answer to his many prayers, but he probably had some measure of acceptance of God’s will, not his being done.

Imagine his current journey.  “OK St. Peter, if there is no other way, I can give you a window on the morning of July 12. Check with God, Jesus and the Holy Spirit to see if that will work.  Set up some time with WD, Francis, and Edward.”  And St. Peter’s reply: “Yes Mr. Hanlon, that can work.  As it turns out, Heaven is in need of a benevolent CEO, smart and challenging mentor, rainmaking salesman, relentless fitness buff, snow and water skier, driving hiker, sensitive husband and father, thoughtful son, caring brother, and cherished friend.  We think you’ll be a good fit.”

—Michael Beacham

---

July 15, 2019

On Thursday afternoon my husband Rich, my brothers Tom and Bobby, and our loving sister-in-law Denise, along with their children Lilly, Mark, and EllRose, and I found ourselves on the varsity team that would help lead Kevin into Heaven.

Over the course of that day and into early Friday morning we watched a heroic fight for life unlike anything we have ever experienced.  In those hours we formed a mystical bond which we will never be able to explain to anybody.

Because of this and our great love for Kevin none of us feels like we can tell you what it has been like to live a life time with our brother Kevin without completely breaking down.

So today on behalf of my mother, and all of our family we would like to thank the Incredible team at Crouse Hospital; especially Dr.Tammy Congelli.  I want to thank Dr. Scalzo and his Oncology team in Syracuse as well as all of the people at Dana-Farber, MD Anderson, Cali Columbia, and especially, Marcia Horn and Carey Gold who led the effort to help Kevin be cured of this cancer.  I would like to thank all of you who have prayed for us and hoped for us and been there for our family.

And on behalf of Kevin and myself we want to recognize and thank St. Charbel Maklouf our beloved saint from Lebanon—for his presence and help since the very earliest days. On one of his initial trips to Dana Farber. Kevin had a beautiful dream that Saint Charbel appeared to him in a field and told him to breathe in everything that was good and holy and pure and breathe out everything that was toxic and bad and harmful. What a dream! Kevin's whole mood changed after this dream and he was very comforted by it!

When we first heard the news of Kevin's illness it was a shot to our hearts.  How was this possible? He was in charge of everything financially and medically speaking for both of our parents who were suffering with Alzheimer's disease. What were we going to do? Kevin immediately pulled together an emergency response team... to plan for what might lie ahead.

 Since that day we have all been living on a huge emotional roller coaster.  When I came downstairs on Friday morning after sleeping very little from the time we returned from the hospital, I said, "Bobby, it's day one." And he said that same thing back to me.  I look forward to the day when I start to lose count.  Is it day 88 or 89?  That will mean this incredible pain is starting to subside.

I wonder how I will go on without Kevin?  I ask him to send me signs from Heaven that he is safely there. And I think of how miraculous it was he was able to get to Big Moose Lake, thanks to Colleen Zogby, and have an incredibly great night's sleep—something he used to worry about so much the night before all of this happened.  God allowed him the huge blessing of not even knowing what hit him in a very sacred and holy moment of prayer in his own bedroom where he was safe and sound.

Think about the timing of that! It didn't happen when he was out in the boat fishing on Saturday or driving up to the lake. It happened in a place that was divinely prepared for this. God made sure a nurse was there with Denise, our sister-in-law, who has been an incredibly supportive and protective spouse through this entire journey.

It was also a blessing that both of my parents were sheltered from the unbearable sorrow of understanding that Kevin had lung cancer.  These are just a few of the many miracles along the way.  They were woven into days that have at times been very scary and sad.  Make sure you share your miraculous stories to come with us—because they’re coming.   He has finished his race and our lives are forever changed. Today is day four.

God Rest Your Soul Kevin Hanlon.  We love you so very, very much.

—Margaret Hanlon

---

SuperKev
July 15, 2019

Over these past 24 years with my dad, I have collected so many memories and lessons that I would love to share. Though if I did, we would be here for three weeks because as we all know, Kevin Hanlon packed at least five full lifetimes into his 62 years. Most of you knew Super Kev as the fiercest friend, the most engaging athletic companion, and predominantly, the toughest fighter.

Although I adored these characteristics about him, to me, he was Super Kev because of who he was as a father. I was his Favorite Oldest Daughter, and he, my Favorite Only Dad. Together, we were Team FOD, a small, but powerful subset of Team Hanlon, who loved doing anything and everything together, from our first camp out together at Middle Settlement Lake in 1998, to riding 84 miles together in the Pan-Mass Challenge for cancer research last summer.

Despite living out of state over these past six years, he was a constant and persistent loving presence in my life. I would receive daily texts saying, “Hi kiddo, miss you! Please tell me about your day. XOXO Love, Daddio” and then he would add anywhere from six to 30 emojis of hearts, thumbs up, sneakers, bikes, and other athletic images which I knew to mean he wanted to know if I had worked out that day.

Family came first, and his love for us was simply unquestionable. Even though he was the hardest worker and busiest man ever, he was at every single athletic game of mine growing up, which meant he once drove four hours for a 25-minute college cross-country meet. That was Super Kev.

The day I graduated from college, my dad gave me a handwritten letter. Amongst all of the lessons he wrote to me in that letter, the one that stuck with me the most is how invaluable it can be to make people feel special. My dad was so good at making everyone feel special, and in my eyes, it was his greatest talent and strength. He was genuinely curious about people, and made an effort to remember things important to them. One of my summer projects at ComSource was to organize my dad’s customer’s personal notes. I remember laughing out loud at some of the things he had written down, like “Jim’s wife’s favorite donut from Dunkin is a Boston Crème,” or “Paul got his PR in a 2012 5K with a time of 18:35,” but it was these personal tidbits that made all of the difference in his relationships. He made everything fun. He had an unmatched energy for life that I now crave in his absence. He could make cutting down a Christmas tree the most exciting hour of the whole year. He had full engagement in every conversation, and saw the best in people. Not only did he see the best in people, but he saw their potential. He had a unique skill of giving people the confidence and tools to make them better physically, mentally, emotionally, and spiritually. He has pushed our family to climb higher and love deeper. It is because of him that my family and I are now strong enough to get through this.

As I laid next to him in the hospital last week, I told him that there was so much I wanted him to know, and that I would tell him in parts, because there is just too much. Dad, thank you for instilling in me a love of play and adventure, for bringing laughter to a room, for being my biggest fan, and for showing me the powerful impact of genuine courage, strong faith, and constant positivity. Through the toughest moments and saddest times over the last three years, there wasn’t a day that we didn’t see a smile out of that man.

I’ll see you every time I listen to Il Divo, Celine Dion, and Avril Lavigne. I’ll hear you at 7 AM honking the boat horn from down on the dock, knowing it’s glass out and time for our ski. I’ll hear you playing Canon in D as the rest of us fall asleep upstairs. I’ll see you at the top of Mount Marcy, on the chairlift at Togg, at the end of the Pan-Mass Challenge, and at ALL of my future children’s sporting events. I’ll see you running around the mall, hiding from us during a spontaneous game of hide and seek, I’ll see you running through cornfields with the dogs, and after you cross the finish line of your own race, I’ll see you running back up the course to help me finish mine, cheering me on always. I thank God that you were mine, and now, God, we give him back to you, because I know you needed a track coach, and he was the best man for the job.

In a way, his battle with cancer was like running. They are both part physical, part mental, and both of these are necessary in the conquer. If you’re running and are physically healthy, but your heart isn’t in it, it is so easy to just stop and quit. Although dad wasn’t physically healthy, his heart was in the battle 100 percent. This is why he outlived his four-month prognosis by three years. He never gave up mentally, and only was the battle over when his physical self could no longer fight. We are all so excited for him to put back on his running shoes, and let himself have that physical freedom he so longed for.

As unbearably heartbroken as I am, I am so grateful for his peace, and know that we will be reunited one day. I find comfort knowing that half of our little family is down here, while dad is getting reacquainted with his dad, Francis, Edward, Daisy, Harper, and our Guinea pigs may god bless them. Last week I told him I was so curious where I would see him, and what signs he will show. I told him that I am giving him full permission to come back as anything except a mountain lion, because I know how much he would love to come back as a mountain lion.

Super Kev, you have inspired all of us to play not on the JV, but on the Varsity Team of life. My rock star, my FOD, my favorite adventurer, my angel, we are all looking forward to fist bumping you again.

—Lilly Hanlon

---

Kevin, we will always miss you and mourn your passing but celebrate the fact that you came into our lives and have touched so many lives along the way. When exon 20 is defeated, you will deserve much of the credit from both the Exon 20 Group and the research teams you personally touched. (Kevin M. Hanlon Clinical Trials Program at ICAN) You embodied the very definition of the word inspiration.

We salute you, our dear friend, and vow to you, through your beloved brother, the ever-resourceful and creative Bob Hanlon—who now takes on the role of chairman of the Exon 20 Group—that the Exon 20 Group will continue to give up on no patient. Daily we will ask ourselves, "Are we living up to Kevin's very high expectations in this multi-faceted, highly-individualized, and ambitious fight to convert exon 20 into a chronic and maintenance disease?" You, with your powerful drive for excellence and total commitment in all you achieved in this life, would not want it any other way.

—Marcia Horn