Our Story

I’ll never forget the moment I looked at my mother’s MRI results. December 6, 2018.

 

I googled the terms “glioma” and “multiforme” and began learning what it meant. I lost it. I was devastated. Every muscle in my body tensed and my stomach turned over. It felt like I was dry heaving. I couldn’t breath. I went upstairs, sat down on the couch next to my mom and wept uncontrollably. I wanted to hold my mom forever thinking that maybe one day I wouldn’t be able to hold her like this.

 

59 days later, she passed.

 

Every day, a doctor walks into an exam room and tells a patient that they have been diagnosed with glioblastoma (GBM). A patient and their family learns that GBM is the most common, complex, treatment-resistant, and deadliest type of brain tumor.

 

What is GBM Awareness Day?

Often referred to as a monster of a disease, GBM takes so much from those that are affected – patients, families, caregivers, and loved ones. In the face of a glioblastoma diagnosis, families rely on love, hope, and the promise that research is advancing toward a cure. Every patient and family is different, each with their own journey, but all deserve recognition and action to defeat GBM. 

 

The National Brain Tumor Society created the second annual Glioblastoma Awareness Day (#GBMDay) on July 22, 2o2o, to raise the national consciousness about everyone’s stake in finding a cure. Please join us in honoring our angel in heaven, Melanie Sutter.

 

On behalf of the Live Like Mel Foundation, I ask that you help take part in this day by taking one or both of the following steps:

 

(1) Share a photo of Mel on social media and use the hashtag #GBMDay

    • Using the hashtag #GBMDay works to change that conversation. We seek to honor and remember, as well as to take action to help others currently facing glioblastoma, and all who may be impacted in the future. By engaging online, you can help amplify the GBM Awareness message and achieve the broad public awareness on Glioblastoma Awareness Day. Collectively, our voices are louder and powerful together. Post your photo to social media tagging the National Brain Tumor Society (@NBTStweets on Twitter; @braintumors on Facebook; and @natlbraintumorsociety on Instagram), and the hashtag #GBMDay.

 

(2) Give to the Live Like Mel Foundation

    • Soon after Mel passed, we set up a nonprofit organization called the Live Like Mel Foundation to keep her legacy alive. While we have already provided financial awards to educators to honor Melanie’s career in education, we also plan to create a Quick Guide to GBM, providing patients and families an online book they can quickly review that will give them a head start to learning about GBM and all of the holistic options available. Melanie’s family spent over 100 hours researching GBM in the first month because this disease lacks funding and awareness. We want to help eliminate the hours and hours that each family spends when they first find out about GBM. This will not only save them time, but it will allow them to spend that time with their loved one. We will use all donations to begin forming a team of families who have been impacted and have extensively researched GBM to create these needed educational tools. Please consider donating to the Live Like Mel Foundation. Any amount is appreciated, $5, $10, $20, as a one-time or ongoing donation. Click here to donate.

 

Thank you for your kindness, love and support! Mel lives within each of us. We are so honored to keep her legacy alive. Remember to live life to the fullest each day, just like Mel did. Always remember to Live Like Mel!

— Love, Cory, Mel’s son

 

What is GBM?

Glioblastoma (or GBM) is a type of brain cancer. It’s the most common type of malignant brain tumor among adults. And it is usually very aggressive, which means it can grow fast and spread quickly. Although there is no cure, there are treatments to help ease symptoms.

 

GBM is a disease that all Americans should care about. It can strike men, women, and children of any age, background, and walk of life. It does not discriminate on gender, socioeconomic status, region, age, or political party.

 

Glioblastoma, though it affects thousands of families each year, is technically a rare disease. As such, it has received little of the same national attention as other, more prevalent cancers. However, this cancer entered into the national consciousness when Senator John McCain became the second prominent member of the United States Senate (following the passing of Senator Edward “Ted” Kennedy in 2009) to die from glioblastoma in 2018. Though McCain was a conservative Republican from the southwest and Kennedy a liberal Democrat from the northeast, these two always shared a close bond in life, and, sadly, are now bonded in their passing from a GBM.

 

Glioblastoma Facts & Figures

  • Glioblastoma (or GBM) is one of the most complex, deadly, and treatment-resistant cancers.
  • More than 13,000 Americans are expected to receive a GBM diagnosis in 2020.
  • GBM accounts for 48 percent of all primary malignant brain tumors.
  • It is estimated that more than 10,000 individuals in the United States will succumb to glioblastoma every year.
  • The five-year survival rate for glioblastoma patients is only 6.8 percent, and the average length of survival for glioblastoma patients is estimated to be only 12 to 18 months.
  • Survival rates and mortality statistics for GBM have been virtually unchanged for decades.
  • Despite first being identified in the scientific literature in the 1920’s, there have only been four drugs and one device ever approved by the FDA for the treatment of glioblastoma.
  • None of these treatments have succeeded in significantly extending patient lives beyond a few extra months.
  • Some patients have a glioblastoma upon diagnosis (de novo or primary GBM), while other patients’ tumors start as another, lower-grade type of brain tumor and over time progress into a glioblastoma (secondary GBM). A vast majority of GBM diagnoses are de novo.
  • Mean age at diagnosis is 64.
  • In addition to being life-threatening, GBM – and its harsh treatments – inflict devastation upon the brain, which controls cognition, mood, behavior, and every function of every organ and body part.
  • Many patients will lose their ability to work, drive, and a host of other functions that contribute to one’s sense of self and independence.
  • Glioblastoma is also one of the more expensive cancers to treat, often leaving patients and families with major financial hardship on top of the burdens of the disease.
  • Prominent Americans who’ve been lost to this type of cancer include: Beau Biden (son of former Vice President Joe Biden, and former Attorney General for the state of Delaware); Gary Carter (Hall of Fame Major League Baseball player); U.S. Senator Edward “Ted” Kennedy (Democratic politician); U.S. Senator John McCain (Republican politician and former presidential nominee); and Edward “Tug” McGraw (Major League Baseball player and father of country music star and actor, Tim McGraw).
  • Despite these daunting facts and figures, there is hope. Science is advancing rapidly and there are promising research strategies moving forward.

 

SOURCE: National Brain Tumor Society

 

About the Live Like Mel Foundation

The Live Like Mel Foundation is a non-profit organization that continues the legacy of former Ohio educator, Melanie B. Sutter, who passed away on February 2019, from glioblastoma brain cancer. The purpose of The Live Like Mel Foundation is twofold: 1) to support the field of education by recognizing and providing financial assistance to future and current educators and 2) to support individuals and families impacted by glioblastoma by providing educational information and resources. More information can be found at www.livelikemel.org​