Collaboration between Pediatric Cancer Foundations Funds Clinical Trial for Promising Treatment

[av_textblock textblock_styling_align=” textblock_styling=” textblock_styling_gap=” textblock_styling_mobile=” size=” av-desktop-font-size=” av-medium-font-size=” av-small-font-size=” av-mini-font-size=” font_color=” color=” id=” custom_class=” template_class=” element_template=” one_element_template=” av_uid=’av-kiui2y5k’ sc_version=’1.0′ admin_preview_bg=”]

Two Pediatric Cancer Foundations Collaborate to Fund Clinical Trial

Written by Rachel Wood, Director of Marketing

[UPDATE: Move For Jenn Foundation donates $25,000 to close the gap for this trial.]

2012 wasn’t just the year this world lost Isabella from neuroblastoma, a type of childhood cancer, it is also the year Madison Fedak was born.  From the moment we met Madison, we felt Isabella. These two 7-year-olds were similar in so many ways.  Their personalities. Their eagerness to help others. Their love for life and everyone around them.  

Then 7 years later on December 21, 2019, Madison lost her life to osteosarcoma. 

Throughout her year and a half long battle, Madison touched countless lives.  Not only those who knew Madison but also those who watched her journey from afar were inspired by her courage, her insistence on enjoying life and spreading happiness, despite her cancer.

Among the overwhelming heartbreak and sadness, Madison’s family and friends moved into action to create the Live Like Madison Foundation.  With the help of an entire community standing with them, Live Like Madison is determined to continue Madison’s legacy of creating something positive for kids like Madison who are fighting childhood cancers.

We knew we had to do something too. Something in honor of these two 7-year olds, who lived a similar life…7 years apart.

We are thrilled to announce that Isabella Santos Foundation and Live Like Madison have joined forces to honor Madison’s life in a very special way.  Together, we are co-funding a childhood cancer clinical trial out of Nationwide Children’s in Ohio focused on creating a new way of treating kids fighting relapsed sarcomas.  We can’t think of a better way to honor Madison’s life than to strive to save others.

From the bottom of our hearts, thank you for your support!  Although we are giving $225,000 together, we are hoping to raise the last $25,000 by December 31st to help fund the last stretch for this trial.  

Help ISF and Live Like Madison by DONATING TODAY.


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.


Childhood Cancer Fighter, Madison Fedak, OsteosarcomaMadison | Osteosarcoma (read Madison’ story)

Madison was diagnosed in April of 2018 with osteosarcoma at 5 years old. After several rounds of chemotherapy to shrink the tumor on her femur, she had surgery to remove her right femur and replaced it with one from a cadaver. Fortunately, the medical team was able to remove most of the tumor and save both of Madison’s growth plates, she was able to save her leg and learn to walk again. The cancer returned in September 2019 when a tumor was found in her lungs. After another tumor removal surgery, chemotherapy, and radiation, the tumors continued to spread and Madison ran out of treatment options.

Madison passed away from Osteosarcoma on December 21, 2019, at only 7 years old.

Childhood Cancer Fighter, Corey Morgan, Ewings SarcomaCorey | Ewing’s Sarcoma (read Corey’s story)

At 19 years old, constant pain in Corey’s bones lead to the discovery of stage IV Ewings Sarcoma in November 2018. He was diagnosed with a primary tumor on his adrenal gland, which was surgically removed and Corey underwent chemotherapy. In July 2019, the pain returned and a tumor was found on Corey’s back pressing on his spinal cord. When the tumor was surgically removed, Corey temporarily lost his ability to walk and use his bladder. More tumors were found on his left arm, sacrum, ribs, and pelvis. Corey underwent radiation in an effort to relieve the pain. Unfortunately, the tumors continued to spread and Corey ran out of treatment options.

On November 26, 2019, Corey lost his battle with cancer at 20 years old.

Childhood Cancer Fighter, Nicholas Haag, OsteosarcomaNicholas | Osteosarcoma (read Nicholas’ story)

Nicholas was diagnosed with stage IV Osteosarcoma at 13 years old. He relapsed in 2018 at 17 years old when the cancer was found in his bones again and metastasized to his lungs. Nicholas had a knee replacement, hip replacement to replace the diseased pelvic bones, and lung removal surgery. Both times he had to learn how to walk all over again. In June 2020, Nicholas learned his tumors had started to take over and had grown significantly larger. Nicholas battled cancer for 5 years and due to the lack of research and funding for rare pediatric cancers ran out of treatment options.

On June 23, 2020, Nicholas lost his cancer battle just a week shy of his 18th birthday.

DONATE TODAY.[/av_textblock] [av_layout_row border=” min_height_percent=” min_height=’0′ color=’main_color’ mobile=’av-flex-cells’ id=’donate’ av_element_hidden_in_editor=’0′ mobile_breaking=” av_uid=’av-kiui5j3z’] [av_cell_one_full av_uid=’av-266joc’] [av_codeblock wrapper_element=” wrapper_element_attributes=” codeblock_type=” av_uid=’av-kiui2ktg’]


[/av_codeblock] [/av_cell_one_full] [/av_layout_row]

Share This Article!