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Kicking Off 2021 with $25,000 to Sarcoma Research (TINKS Trial)

It was early Monday morning, December 21st, and I rolled over to grab my phone and check emails before getting out of bed.  I was scrolling through my inbox, and I saw the Isabella Santos Foundation (ISF) email pop up. I eagerly clicked it, well, because it was ISF.  To be honest, I have always looked up to them.  They set the standard and the bar high for what a cancer-based nonprofit should look like.  I have watched their growth for years and really have always been in awe of the impact they have been able to make in the pediatric cancer world.  My interest peaked with them even more several years ago, as they expanded their “rare pediatric cancer” mission to include sarcoma

 

I clicked the email and after reading their update, instantly clicked the video.  You can’t listen to Erin Santos speak about her daughter, Isabella or her nonprofit and not have your eyes glaze over in just seconds of hearing her voice.  Isabella passed away from Neuroblastoma in 2012. And then the water works came when I saw Laura Fedak speaking about her daughter, Madison.  Laura started her nonprofit Live Like Madison (LLM) after her daughter passed away from osteosarcoma in December of 2019. 

 

 

Madison and I battled sarcoma at the same time.  We had the same doctor, and I was constantly following her story for updates.  She was like the little brave superhero who I constantly wanted to know about.  I was able to meet Madison at the ISF gala in October of 2019, not knowing how sick she was at that time.  Even though Madison and I only got to meet once, she had such a HUGE impact on me.  I think it was a combination of fighting the hardest battle of my life at the same time as her and she was the same age as my own daughter. For those reasons alone, it was like I always had to know she was ok.  When she passed, I did not realize how fast things had progressed.  I remember getting the message from Rachel at ISF.  I was getting ready in my bedroom and it was like the world just stopped.  I sat down on my bed and sobbed.  I remember that day so vividly.  I was so heartbroken over the loss of this little girl and if I am going to be completely honest, I couldn’t understand why I was able to overcome my battle and she wasn’t.  I felt sad.  I felt mad.  I felt guilt.  I felt so disappointed.  I could not comprehend that she was gone.  She passed away on December 21, 2019.

 

On December 22, 2019, I was messaging with Laura to express our deepest condolences and I promised her that Move For Jenn (MFJ) would fund research one day in honor of Madison's life.  I did not know when or what that would look like, but I felt it in my gut that it needed to happen.

Fast forward, December 21, 2020 was the 1-year anniversary of Madison’s passing.  As I laid in bed watching the video put together by Erin and Laura that morning, they explained that their nonprofit organizations were working together to fund a clinical trial to help pediatric sarcoma patients who have run out of options (Nationwide Children's, the TINKS trial).  It specifically focused on helping kids whose cancer had spread to the brain to give them more options, when quite frankly, there aren’t any options at that point.  As many of you know from our organization, sarcoma does not have a cure.  So when your child is diagnosed, there is not a set “let’s heal them” plan, because for many subtypes, they don’t know how to fully do that yet.  As I watched, listened and learned about the trial they were funding and how life changing this could be for future pediatric patients, I was blown away.  How incredible to bring HOPE to so many families when they truly need it the most.  I think this also hit me really hard because I have been mentoring and advocating for families who have young kids with these types of cancers and hearing that there are no options is devastating.  I know personally, I become extremely emotionally invested when I invest my time into these families.  I want to help them find options, opinions and answers.  All I could think about was how this could be a game changing plan for so many of these families.  I kept watching and the more I listened, the more eager I felt to want to help and be a part of it.  At the end of the video, they explained how ISF was donating $125k and LLM was donating $100k, but they still needed to raise another $25k to complete the funding for this trial.  I sat there with my jaw on the floor, huge butterflies in my stomach and my brain was churning.  My husband, Miles, was still asleep next to me and I jumped out of bed.  I woke him up and told him to immediately watch the video.  He did.  Then I proceeded to tell him we needed to write the check for the $25k to close their gap.  He was on board immediately. 

 

Research has been a part of our mission since we started and this was the perfect opportunity for us to get to help in a whole new capacity, but also to come together with two of our favorite local nonprofits to help make a huge impact.  I was literally bouncing off the walls and we immediately went into action mode.  We emailed ISF and LLM, along with our MFJ board of directors.  It was an instant YES approval from the entire MFJ board.  The excitement from Erin, Laura, the ISF and LLM teams had us even more ecstatic (if that was even possible). 

 

I think one of the coolest parts of this, aside from getting to be a part of a HUGE research opportunity that has the potential to literally change the trajectory for how sarcoma patients are cared for, are the partnerships with the other foundations that we have so much respect for.  Some of you may remember that the ISF race was the first race I ran in a running blade in September of 2018.  You may also remember that we raised $3000 through our team that year that ISF so GENEROUSLY gave back to MFJ.  This $3k was a big deal.  It was a big deal for a nonprofit like theirs to give funding back to us, but also it was during a time when we were just getting started.  They didn’t know if we were going to be successful yet or if we would flop after a year.  My heart literally swells thinking about the fact that we get to support their clinical trial and pay back that investment that they put in us (8 x plus!)!

 

So here we are.  Surviving 2020, thanks to our incredible team, our incredible board of directors, and our incredible community.  We are kicking off 2021 by writing our LARGEST check yet for $25,000 to help support sarcoma research with two other incredible nonprofits.  Thank you for helping one of our dreams come true.  We get to be a small piece of helping to find a cure.  I am so proud of everyone who has supported us to help make this happen.  If you have made a donation, attended an event, purchased a shirt, shared a post, thank you. 

 

To ISF and LLM, thank you for letting us be a part of this incredible opportunity.  We hope to help other families like yours.  Erin and Laura, your daughters would be SO proud of everything you both are doing.  Thank you for letting us lock arms with you all to be a part of this incredible project.  At the Move for Jenn Foundation, we always live by the saying that we are stronger together.  This opportunity truly shows it.  We are honored to join forces with you both to help future patients.   Thank you. <3

 

CHILDHOOD CANCER CLINICAL TRIAL DETAILS

(Information cited from the Isabella Santos Foundation website here)

 

Nationwide Children’s, The TINKS Trial

Approximately more than 500 children each year are affected with relapsed sarcomas or refractory tumors.  Nationwide Children’s TINKS clinical trial will help researchers test and learn more about how the Natural Killer Cell survives and functions in patients with relapsed sarcomas.  This will help further develop this novel, effective therapy for patients.

The Problem

Bone and soft tissue sarcomas account for 20% of solid tumors diagnosed in childhood.  Over the past 40 years, guided by the “more is better” approach the current standard of care combines multiple toxic chemotherapy drugs with aggressive surgery or radiation, achieving cure in 60-70% of patients.  However, survival rates for those with relapsed or refractory tumors remain abysmal with 5-year survival rates for osteosarcoma, Ewing’s sarcoma, and rhabdomyosarcoma reported between 17 and 23%.  Despite multiple clinical trials over the past 20 years, this number remains unchanged.

The Research

Multiple studies have demonstrated Natural Killer Cells to be extremely effective against pediatric sarcomas.  These types of cells display innate behaviors that suppress & kill malignant tumors, additionally, they have shown significant impact in treatment at the sarcoma onset, during frontline therapy, and at time of relapse.  However, additional research is needed to learn more about their aggressive behaviors on sarcomas when combined with other therapies.

Trial Details:

  • Multi-institutional consortium created, consisting of 26 clinical trial sites to test the combination therapy
  • 28 patients with relapsed disease will be enrolled over the course of 2 years.
  • Levine Children’s is a participating site, relapsed sarcoma patients can be enrolled
  • Each patient will receive a targeted combination therapy:  6 cycles of chemotherapy with Killer Cell infusions and possible radiation therapy or surgical resection.
  • Blood and tumor samples will be collected to better understand the effect of chemotherapy with the Natural Killer Cell infusions

Planned Outcomes:

  • Successful collection and analysis of blood samples and tumor tissues from 28 patients.
  • Samples will be analyzed in 3 locations.
  • Targeted and less toxic therapies with the potential to significantly improve overall survival outcomes for this patient population.

 

How To Support Us?

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Move For Jenn Foundation Apparel

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