MOHOPE 2020!!

Opening statement from Christina Sgambato, Director of A Matter of Hope

“The day has finally come. Welcome friends, across the states and around the globe, to A Matter of Hope,  a day  of raising #MoHope for all of the Cholangiocarcinoma warriors out there, and in honor of all the warriors no longer with us, especially our man of honor, my husband, Matt. Matt would have been 36 years old yesterday;  1 year, 8 months, and 1 day ago , he became a dad. Just a week after the birth of our son, he was diagnosed with Stage IV Cholangiocarcinoma, a rare, aggressive and highly lethal form of cancer. 

Most of you here are familiar with our story; with how Matt’s grim diagnosis came as a complete shock, heeding basically zero warning signs until the disease progressed enough to land him in the hospital. At that point, it had already spread quite ferociously throughout his liver. As with many of you, we had never heard of this kind of cancer before. Even the physicians taking care of Matt were skeptical to diagnose because of it’s rarity, Matt’s age and his state of health. ‘This kid can’t have cholangiocarcinoma…can he?’

We never asked his oncologists for a prognosis. Days, weeks, months, years….we didn’t know for sure. We chose to focus on what we could do instead of what we had no control over. The reality is, the “what we could do” was limited and disheartening to put it lightly. Chemotherapy treatments, at least the options available now, are relatively ineffective long term; Matt actually had a rare, positive response with his first chemo, which reduced his disease burden tremendously. But that was not enough. We’d spend weeks at a time researching “next steps;” there was even a point that Matt remained untreated for 6 weeks while we worked on getting him into clinical trials or trying to figure out what we could do. This is not acceptable. 

Lack of attention means lack of funding means lack of research means lack of options. Being diagnosed with any form of cancer is traumatic; being diagnosed with a rare cancer is devastating. I stand here today, to assure that when Matt was diagnosed and when Matt died, he was not the only person shattered. I lost my husband that day. Bryson lost his father. Ralph and Heli lost their son. Lia and Kris lost their brother. Lynne and Jim lost their son in law. Judi, Lindsay, and Tim lost their brother in law. Josephine, Wintson, and Marcella lost their uncle. Shane and Joe (and many others) lost their best friend. Cousins. Uncles. Aunts. The 400+ people who came to Matt’s services and the MANY more who have stepped forward to support our cause today, were forever changed.

And we are one story. We are one incident of loss. There are hundreds of thousands of rare cancer stories like this every year. From 2012 to 2016, 75% of clinical trials did not include any rare cancers by name.  As of 2018, 79% of cancer patients lacking an FDA-approved targeted therapy had a rare cancer. In regards to Cholangiocarcinoma, the rate of incidents and the rate of mortality are RISING. In a 2017 survey, liver and cholangiocarcinoma had THE highest percent increase in mortality rates and the second highest percent increase in # of cases of all cancers.  My aunt, a breast cancer survivor recently posted something on Facebook that I’d like to share. She said “Being a breast cancer survivor myself, I am a big supporter because I am alive to be a supporter. It’s all due to years of research that can save lives now. We need to continue this fight to beat ALL cancers.” I will repeat that phrase again “we need to continue this fight to beat ALL cancers.” 

When we flew out to the Mayo Clinic in Rochester MN, because that’s where we needed to go to find a specialist, we met with a surgeon there. He told us that all we needed to do was focus on time. Just keep hoping and fighting for more time because with that comes greater opportunity for advancements in treatment options and potentially the silver bullet cure. In order for that to happen, there needs to be funding to back up these programs. The Cholangiocarcinoma Foundation has raised over 1.9 million dollars to support clinical trials and research in the fight against bile duct cancer. Though Matt can’t be here to physically fight this battle any more, I am honored to say that our A Matter of Hope community, to date, has raised $20,019.05 for the Cholangiocarcinoma Foundation to continue this fight for him. This in the midst of a pandemic and without any sort of corporate sponsorship. These are individual donations. Each and every one of you has played a role in buying more time, more treatment options, and one day….finding a cure. If that isn’t something to hang your hat on, I don’t know what is. 

I’d like to give an extra special thank you to our A Matter of Hope Team. When I brought up this idea of throwing a fundraiser in Matt’s spirit, all of these individuals did not hesitate to jump in and help. Despite being new parents, being geographically distant, and dealing with their own grief, they jumped right in with me. When a pandemic hit and an economic crisis ensued, they buckled down even more, researching and brainstorming ways to make this work on Matt’s birthday weekend regardless. I will never be able to thank them enough for not giving up. So thank you Jenn, Judi, Alley, Megan, Deni, Drew, Lindsay, Tim, Heli, Lia, and Mike. You all have played an unparalleled role in making this event a major success, backed up by an incredible community of supporters out there. 

-Now, this is the point when Matt would say “Hey Christina, I’m pretty sure it’s beer oclock” and swirl his fingers at me, indicating it’s time to wrap it up. So, without further adieu, I am officially announcing the start of the #Mohope2020 and our Scavenger hunt! I’ll be sliding back in around 2:00 to direct you over to our band, Soundtown. Until then, Document the Day, Hop on the Night Train, and LETS GET WEIRD.”

HELP US SPREAD #MOHOPE2020

We invite all those who have awesome photos, videos, and memories of Matt and/or other CCA fighters to share using the hashtag #mohope2020. Every Monday, we honor our man of honor with #MattMomentMonday, a day we dedicate to sharing our recent “matt moments,” or moments that just remind you of our legendary, slightly eccentric, Matt. Follow us on Instagram (@matterofhope) and Facebook (@mohopebaltimore) for contests, news, and more!