What Will Your Legacy Be?

An Interview with: Danny Monson about the KM (Kindness Matters) Legacy Foundation.

This month Katie Monson would have celebrated her 22nd birthday.  She also would have been graduating from UCLA (where she was studying political science). 

However, in May of 2017, just when Katie was finishing up her freshman year at UCLA she received the terminal diagnosis of Glioblastoma Multiforme (GBM) (an extremely aggressive form of brain cancer).

While going through cancer treatments (at the tender age of 20), Katie spent the last year of her life creating the KM (Kindness Matters) Legacy Foundation.  She formed the foundation to advance brain cancer research and promote kindness through youth leadership opportunities. Compared to other cancers, primary brain cancer is rare, and therefore it is one of the least funded of all the cancers. 

Katie’s legacy was Kindness.  She believed with all her heart that Kindness Matters! She wanted to make a difference, and she did!  It’s pretty remarkable that Katie was able to leave a legacy like this at such a young age.  Although her time here was far too short, she made a lasting impact on the greater good.  Her family now carries on what Katie started.

‘What do you want your legacy to be?’  This is a question I have asked several donors during my career as a professional fundraiser.  I asked the question to evaluate what kind of impact the person I was speaking with wanted to have on the non-profit organization that I was representing. I started thinking about this question in a slightly different way after my own brain cancer diagnosis. Most of the intentions behind the things I do now are based on what I would like my legacy to be.  For instance, last year I was the survivor speaker at the American Brain Tumor Association’s (ABTA) BT5K run/walk in Los Angeles.  I also served on the ABTA BT5K planning committee (which is where I met Danny, Katie’s father).  My desire to speak at the event derived from the fact that for so long my husband and son have had to witness me lying down and not feeling well.  I wanted them to see me standing up and inspiring others. That, I hope, will be part of my legacy.

This October will mark three years since the KM Legacy Foundation was created.  The foundation’s next big fundraising event will be the annual Kindness Matters Walk on Thanksgiving morning.  The walk is in Fullerton, but they offer a virtual option too (so anyone can participate).   Here’s what they wrote in their foundation newsletter about the walk last year; “it was a huge success despite the downpour of rain that drenched several hundred walkers.  Fifty volunteers helped us with set-up and marking a short walk route around the courthouse as an alternate means of celebrating Kindness.  The walk raised $50,000 and as a result, $20,000 was donated to brain cancer research, and $31,000 in college scholarships were awarded.  For the first time, the foundation was able to award scholarships to students from six high schools in the Fullerton Joint Union High School District – what a blessing!”  Click here to see a list of the awardees and the virtual school presentations.

Since its inception the KM Legacy Foundation; “has funded over $80,000 in college scholarships to very kind, hardworking students in the North Orange County area and over $55,000 in cancer research donations.” 

 “As a former member of Fullerton Union High School’s (FUHS) ASB (Associated Student Body), Katie believed the leadership opportunities she was offered greatly shaped her personality and outlook on life.  Her FUHS experience enabled her to persevere through health and personal challenges that quickly came her way right after high school. The foundation provides scholarships to students as a way to carry forward similar opportunities to future leaders.”

Despite POURING rain, the KM Legacy Foundation still had several hundred people show up for their annual walk last year.
Danny’s family company partnered with the ABTA to “wrap” one of its trailers with brain tumor awareness information.

Wendy:   Hello Danny, thank you for the honor of interviewing you today about Katie and the KM Legacy foundation.  Katie was clearly a beautiful person inside and out.  What do you most want people to know about her?

Danny:   Katie was a beautiful, caring young woman who fought cancer/GBM with everything she had.  Even before she learned she had a brain tumor, she wanted to “give back” in some way.  She had saved her high school graduation money (several hundred dollars I recall) and planned to scholarship one of the ASB students from her high school. 

During her senior year in high school, Katie was the school’s ASB President.  For Valentine’s Day, she came up with the idea to have the ASB write Valentine’s Day cards for each student on campus.  She wanted to make sure each student at the school felt connected and special. 

Katie was also a HUGE Disney fan!  She had been trying to get a job at Disneyland, but cancer had other plans.  Disney however, made Katie an Honorary Disney Guide for a day just two weeks before Katie passed away – and allowed Katie one last day at her favorite place.

“Even before she learned she had a brain tumor, she wanted to “give back” in some way.  She had saved her high school graduation money (several hundred dollars I recall) and planned to scholarship one of the ASB students from her high school.”

Wendy:  How was the GBM discovered?

Danny:  Katie’s left eye had turned inward.  She came home from UCLA on Friday, May 12, 2017.  She went on her own to our eye doctor that afternoon.  Dr. Matt Zore saw that Katie’s optic nerve was inflamed, and assumed something was pressing on it.  He was thoughtful enough to ask Katie to call her mom and ask her to come to his office as soon as she could.  Dr. Zore waited for Katie’s mom to arrive, and he advised them to go to the Emergency Room for a scan.  I was at the Angels game with friends.  Katie called me and shared what was going on, but let me know it wasn’t serious and to stay at the game.  Katie and her mom even grabbed take-out before heading to the ER.  I still felt something wasn’t right, and we left the game early.  Shortly after I got to the ER, a couple of doctors came in to talk with us and let us know the scan of Katie’s head revealed a golf-ball-sized tumor.

Wendy:  What treatments did she endure? 

Danny:  After surgery, Katie had chemo and radiation.  After that, she began wearing the Optune device.  However, the cancer spread to her Cerebrospinal fluid (CSF) and Optune became unnecessary.  She began taking chemo again through spinal tap injections – I didn’t count, but I suspect she endured 75 injections into her spine and/or brain (through a port that was installed).  The injections and steroids seemed to work for a while – before GBM really took over and rapidly spread throughout her brain and spinal cord.  She also had laser ablation surgery to remove two more tumors deep in her brain – a first for this type of procedure at St. Jude Medical Center (something Katie was proud of!).  I recall a couple of occasions that we discussed treatments with Katie’s medical team – and Katie wanted to pursue several treatments even if she knew it probably wouldn’t be an effective treatment for her.  She hoped by doing so, that it may in some way help others.

“…Katie wanted to pursue several treatments even if she knew it probably wouldn’t be an effective treatment for her.  She hoped by doing so, that it may in some way help others.”

Wendy:  Following is a photo of Katie with Joe Biden.  Mr. Biden’s book, Promise Me, Dad is on my suggested reading list. Can you please tell us about the photo?  

Danny:  Katie, her sister, mom, and aunt went to Mr. Biden’s book tour stop in Los Angeles.  Katie’s aunt wrote to Mr. Biden’s representative in advance of the date.  While driving to the event, Mr. Biden’s representative called Katie’s aunt and advised her that Mr. Biden wanted to meet Katie before the event.  They all were able to meet the former Vice President backstage, and Katie was able to talk with him one-on-one for several minutes – he was very sincere and understanding of Katie’s circumstances (remember – his son Beau also died from GBM).  He even delayed going on stage to wait for Katie’s mom to arrive (she was parking the car).  Mr. Biden also introduced them to Maria Shriver.  The Vice President, Mrs. Shriver, and Katie discussed the need for more research funding for brain cancer.  A special evening!

Wendy:  It’s pretty incredible that the annual walk has attracted so many people.  How have most of the attendees learned about the event?  

Danny:  The KM Walk is truly a grassroots event.  Katie touched many people’s lives, and through our community in Fullerton – word of the event spread pretty quickly.  Katie’s celebration of life drew almost 1,100 people!  We have a group of about 50 volunteers who help support the walk and spread the word.  Lots of family, friends, neighbors, classmates (both in Fullerton and at UCLA), and co-workers attend the event.  We also promote the event heavily on social media.

“Katie’s celebration of life drew almost 1,100 people!” 

Wendy:  You mentioned Katie was in a sorority while at UCLA.  Can you please tell us about how her involvement with the sorority shaped her freshman year of college?

Danny:  As Katie arrived on campus at UCLA, she realized that she needed to meet other people and find a passion to get involved with.  Enter Alpha Delta Pi (ADPi).  She made some great friends at ADPi, and my wife and I were so excited to meet Katie’s new friends.  We still support Katie’s sorority (ADPi) whenever we can – and try to stay connected to some of her sorority sisters too.  ADPi had a team in the Relay For Life event at UCLA.  We donated to their team and traveled up to UCLA to attend the event and support the relay team.  Much like the BT5K walk with ABTA, the Relay for Life event is also a very moving event to attend.  Katie liked Pizookie’s (cookie ice cream desserts).  ADPi held an ADPi Zookie event in 2019 as their primary fundraiser.  They donated half of the events proceeds to the KM Legacy Foundation.  Events like this and others (i.e. pie sales, craft sales, school coin drives, matching corporate donations, etc.) have continued to fund the KM Legacy Foundation throughout the year.

Wendy:  What are a few things you want people to know about brain cancer?

Danny:  Brain cancer is rare (statistically speaking).  Anyone can get brain cancer.  All cancers suck – they are terrible diseases that wreak havoc on the patient and their family.  We need more research funds to find a cure for brain cancer.  I hope in my lifetime a cure is found.

“We need more research funds to find a cure for brain cancer. I hope in my lifetime a cure is found.”

Wendy:  UCLA formed a “Kindness Institute” last year, is there any relation between the Kindness Institute and the KM (Kindness Matters) Legacy Foundation? 

Danny: No relation to us, but I’ve reached out to their director to see what/if anything our two groups can do together.  UCLA holds a special place in our hearts!   

Wendy:  Danny, I am very sorry about the loss of your loving daughter. I am also amazed by the positive impact Katie had (especially while going through so much). I am inspired by her legacy and she has proven that kindness really does matter. Is there anything else you would like to say or add? 

Danny:  I’d like to comment on our leadership scholarships.  Leadership development played an instrumental role in Katie’s life – something that I think aided her as she went through 15 months of brain tumor treatment.

The first two years, we offered scholarships to graduating seniors at Fullerton High School only.  This year, we expanded our scholarship program to all six high schools in the Fullerton Joint Union High School District.  We are very excited and proud of this! 

Katie attended the National Student Leadership Council (NSLC) the summer before her junior year in high school.  She used her own funds to attend the conference in Washington D.C.  This experience had such an impact on Katie, that we created the Katie Monson Leadership Scholarship two years ago – scholarships to ASB students at Fullerton High School to attend the NSLC each year.  Along with my wife (Jennifer) and our other two daughters (Julia and Emily), we are excited each year with the opportunity to support these deserving students in their leadership development.

“Leadership development played an instrumental role in Katie’s life – something that I think aided her as she went through 15 months of brain tumor treatment.” 

Wendy:  Thank you, Danny. One final question, where can people find you if they would like to get involved or learn more?

Danny Monson * 714-392-7515 * [email protected] * #KindnessMatters * www.kmlegacyfdn.org * [Facebook] @KMLegacyFoundation * [Instagram] – KMLegacyFdn

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