One hundred percent of every dollar raised in support of the Swifty Foundation goes directly to fund research and promote awareness for developing improved pediatric brain cancer therapies. All the administration expenses of the Swifty Foundation are paid directly by the foundation’s founders. This means every dollar you donate is spent on finding a cure.
Since 2014, the foundation’s inaugural year, $165,000 has been awarded to the following organizations:
Heterogeneity Amongst Metastases in Children with Medulloblastoma: Focusing on the Real Problem
Grant Award: $40,000
This award is a continuation of the research the Swifty Foundation funded in 2015. It is a three-year grant of $120,000 ($40,000/year) and the cost of this grant is being shared by the Ronald McDonald Children’s Charities, Chicagoland Northwest Indiana. The educational and experimental goals outlined in the grant are quite novel, and would be unlikely to be funded from a national agency such as the NIH at this point in time. These funds will allow the researchers to pursue more aggressive and impactful science that could change the way medicine is practiced, rather doing incremental, safe science that is easy to fund but is unlikely to lead to large changes in clinical practice. Preliminary data generated using these funds will hopefully allow us to generate additional data so that the approach will be seen as less novel, thereby allowing the researchers to secure additional funding from large governmental agencies such as the NIH.
Currently, the field of pediatric neuro-oncology is very focused on analysis and target identification within the primary tumor at diagnosis. Although this approach has the potential to reduce toxicity of therapy at diagnosis, it does not address the major cause of death in children, like Michael, with Group 3 and 4 medulloblastoma, which is recurrent metastatic disease. Indeed, the previous research has shown that at the time of recurrence, the original site of medulloblastoma in the cerebellum is void of tumor, and the recurrence is at distant sites along the surface of the brain and spinal cord. This suggests strongly that the metastatic deposits were present from the start, but were microscopic and not detected by MRI. As such, the researchers believe that in order to improve outcomes for children with medulloblastoma, they have to study metastases at recurrence to determine what genetic events are causing them. In addition, they need to try to model metastases in pre-clinical models to develop specific therapeutics, which can be rapidly implemented into the clinic. This grant award and the work of Dr. Michael Taylor and his lab invites a huge paradigm shift in the field of pediatric neuro-oncology which has the potential to significantly improve not only outcomes but also quality of life for children with medulloblastoma.
Helen Devos Children’s Hospital Foundation
Targeting Medulloblastoma Through Individualized Therapeutics
Grant Award $50,000
Central Nervous System (CNS) tumors account for 25-30% of all childhood cancers. The 5-year survival for pediatric CNS tumors is only 71%. Sadly, patients who relapse, like Michael, will most likely succumb to their disease, despite aggressive chemotherapy and radiation. New treatment strategies are needed. This is a clinical trial focusing on personalized medicine. Presently, all drugs are prescribed as “one size fits all.” Personalized medicine seeks to predict how patients will react to certain medications based on their genetic profiles.
The research funded will utilize the expanding knowledge of molecular networks and the action of medications together with standardized biomarker development to create individualized predictions of effective targeted drug combinations for children with medulloblastoma. Through cell cultures and xenographic mice work (the researchers will graft individual tumors onto the skin of mice to allow them to grow like they would in humans), five targeted medications from the pharmaceutical company Novartis will be tested. Dr. Giselle Sholler, formerly with the Van Andel Inistitute, will be the principal investigator of this Phase 1 clinical study.
In achieving the goals of this research study, doctors will be able to offer a first of a kind Phase II study in which novel agents from a single company, Novartis, will be offered in a targeted manner to patients. As medicine advances, we are moving from the era of high dose chemotherapies to more selected therapies based on a deeper understanding of a patients’ tumor. From patients’ cells growing in culture, already profiled, researchers will identify molecular patterns which predict response. Then, patients enrolling in the study will be profiled prior to being assigned a medication. Each targeted medication will be combined with synergistic chemotherapy agents to offer maximum benefit to patients.
The Hospital for Sick Children
Investigating the Biological Diversity of Metastatic Medulloblastoma
Grant Award $50,000
Medulloblastoma is the most common malignant brain tumor of childhood. With current therapies, 5-year survival rates approach 70% for children over 3 and 60% for children under 3. These survival rates have remained stagnant over the past 20 years. This is in part due to two major challenges that remain in the treatment of children with medulloblastoma. The first is that children diagnosed with medulloblastoma often have metastases along the surface of the brain and spinal cord (Michael had metastases). These metastases cannot be surgically removed as they “sugar-coat” the surface of the brain. Current strategies for children with metastases are to increase the amount of radiation to the entire brain and spine, and in some protocols to increase the amount of chemotherapy. Although this approach to increase the amount of radiation has resulted in modest improvements in survival, almost 40% of patients with metastases still relapse and moreover many survivors are left with significant side effects as a result of the higher dose of radiation to the developing brain. However, an even bigger challenge are these patients who relapse with metastases (Michael’s case), as they typically relapse with multiple metastases throughout the brain and spinal cord, which makes surgical resection impossible. In this situation for patients that have previously received radiation therapy, metastatic relapse is an almost uniformly fatal condition despite several therapies attempted over the past 20 years. A major cause of this is unfortunately a lack of understanding of the biology of metastases as medulloblastoma metastases are rarely ever biopsied.
This project will establish the degree of heterogeneity between the different metastatic sites, laying the foundation for the researchers to obtain further funding from national granting agencies to pursue additional more specific analyses such as whole genome sequencing, chromatin immunoprecipitation and RNA-sequencing as well as establish pre-clinical models to generate specific therapies against the metastatic compartment. A thorough understanding of the heterogeneity across metastases is crucial before urgently needed specific therapies against the metastatic compartment can be developed. Treating medulloblastoma patients with targeted therapies without an understanding of the biology of the metastatic compartment is most certainly going to result in failed clinical trials. This study will set the foundation for current efforts in understanding medulloblastoma metastases upon relapse, which remains a very understudied and underfunded area of genomics. Moreover, this will increase awareness among pediatric oncologists with respect to the heterogeneity present in medulloblastoma metastases, and the importance of tissue resampling at the time of medulloblastoma recurrence and/or autopsy.
Kids v Cancer
Making the Creating Hope Act a Reality: New Drugs for Medulloblastoma
Grant Award $25,000
The drugs used to treat Michael’s medulloblastoma were 20-50 years old. They were toxic, and they were ultimately ineffective. While there are almost 900 drugs in the adult cancer pipeline, there are only a handful in the pediatric cancer pipeline. Due to demand, there is little economic incentive for companies to develop drugs for children’s cancers. However, under the Creating Hope Act, if a company or scientist creates a new drug for a pediatric cancer, or any other pediatric rare disease then the FDA issues a voucher. The voucher comes with rights to a faster FDA approval of another drug, perhaps a large market drug, resulting in that drug coming to market many months sooner, creating significant value for the company. The company may also sell the voucher for another pharmaceutical company to use.