The Medulloblastoma Initiative (MBI) is the result of of a life-changing experience. A first-person experience that sparked action that has already begun to transform thousands of lives.
Cancer is a complex theme. Facing it requires addressing many needs and establishing numerous task forces. It is necessary to raise awareness. It is necessary to provide support to patients and their families. It is necessary to create mechanisms for specialized care. It is necessary to build clinical infrastructure to treat patients, and also to ensure access to it. And it is necessary to enable research. Because only research will find a cure.
We at MBI work alongside several other public and private institutions with which we share this steadfast passion — each with a focus. Our focus is research. Our goal is ambitious and urgent. And because of that, our mission must be clear. And clear it is: we exist to raise funds to enable scientific research of the highest level in the search for a cure for medulloblastoma.
SUPPORTERS | DONORS | MEDIA
- Leading the process
- Awareness raising
CHILDREN’S NATIONAL HOSPITAL
- Operational support
- Scientific coordination
THE CURE GROUP 4 CONSORTIUM
13 labs in the US, Canada, and Germany
- Clinical trials
To fulfill its mission of finding a cure for medulloblastoma, the most common pediatric brain cancer, the MBI operates in an ecosystem that is fueled by the support from private donors, from individuals who contribute through networking and awareness building, and from individuals and media outlets that disseminate our message. All these assets are channeled by the MBI to Children’s National in Washington DC, a fundraising partner and the institution in charge of managing, overseeing, and linking donated resources to the researchers, laboratories, and institutions that make up the Cure Group 4 Consortium. The Consortium then focuses on research & development and coordinates the clinical trials that will translate into new treatments, and hopefully a cure for medulloblastoma.
Based on Dr. Roger J. Packer’s vision, The Medulloblastoma Initiative (MBI), is created with support from a founding donation of USD 3 million.
The Cure Group 4 Consortium is established with Dr. Roger J. Packer as principal investigator. Three institutions in the US and one in Canada constituted the initial Consortium group.
The Consortium constitutes its Independent Advisory Board, made up of three renowned researchers — Dr. Ian F. Pollack (UPMC Children's Hospital, Pittsburgh); Scott Pomeroy (Harvard Medical School); and William A. Weiss, (UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco). The role of the Council is to monitor the development of research in accordance with ethical and scientific standards and the allocation of resources to the activities for which they were raised. By the end of August 2021, MBI's consistent effort brought in the first million dollars in donations made by non-founders.
Dr. Sheila Singh joins the Consortium to work on the development of human stem cell lines capable of generating Group 4 medulloblastoma tumors in laboratory models for testing of new drugs.
Dr. Tobey McDonald joins the Consortium to work with molecularly targeted therapies.
The year 2021 ends with USD 5 million raised.
US$ 5 mi
A major breakthrough is achieved: Dr. Sheila Singh establishes the first line of human stem cells capable of generating Group 4 medulloblastoma in a laboratory model — a critical basis for multiple investigations aimed at discovering new drug candidates for clinical trials.
“If the problem is going to be solved,
it’s going to be solved
by this group.”
Dr. Javad Nazarian joins the Consortium to develop a platform for liquid biopsy — a simple blood draw that among others may enable doctors to monitor how a child’s tumor is responding to treatment.
Work on PARP protein inhibitors — potent but non-toxic drugs that have shown promise in the treatment of brain tumors — starts as Drs. Lena M. Kutscher and Carl Koschmann join the Consortium.
The first face to face Consortium workshop is was held at the Children’s National Research & Innovation Campus, in Washington DC.
The MBI is featured in the MIT Sloan alumni website. The story told by MBI founder Fernando Goldsztein was chosen one of the top 10 MIT Sloan alumni stories in 2022.
Three Consortium members co-author an article published in the prestigious journal Nature, describing a groundbreaking discovery that traces the origins of medulloblastoma. The MBI support is acknowledged in the article.
Dr. Dalia Haydar, from Children's National, joins the Consortium to expand research on CAR-T cells that harness the body’s own immune system to seek and destroy tumor cells.
Children’s National produces and launches the No Time to Lose video campaign, sealing the partnership between the MBI and Children's National, where Dr. Roger Packer, Cure Group 4 Consortium Principal Investigator, is based.
The year 2022 ends with USD 8 million raised.
US$ 8 mi
Dr. Wechsler-Reya's lab moves to Columbia University, where the team will continue the Consortium's essential work.
Dr. Michael Taylor, a world-renowned physician, neurosurgeon and researcher and a member of the Consortium since the early days in 2021, takes his work with medulloblastoma to Texas Children’s Hospital, thus expanding the Consortium reach.
The most important highlight of the second Cure Group 4 Consortium Workshop was the announcement that the Consortium's advances have enabled the planning of two clinical trials to be launched over the next 6 to 12 months.
The MBI is presented at MIT to a packed Wong Auditorium as part of the Ideas Made to Matter Talks in the 2023 MIT Sloan Alumni Reunion
"Children should not have cancer," stated MBI founder in a video interview with EXAME, a major Brazilian news and business magazine, with massive repercussions.
The MBI is covered in a story in newspaper O Globo — a powerful daily engaging readers in Brazil and abroad. Because the technological advances of many fields have not resulted in better cancer treatments for children, the impact of the MBI has been incredible, engaging institutions, researchers, and donors to focus on curing medulloblastoma, which accounts for nearly 50% of pediatric brain tumors.
MBI launches an effort to engage scientific partners in Brazil for the planning of clinical trials.
The year 2021 ends with USD 5 million raised.
US$ 5 mi
US$ 8 mi
O case da MBI é apresentado ao vivo como parte da sessão Ideas Made to Matter no encontro de 2023 dos ex-alunos da MIT Sloan.
"Crianças não deveriam ter câncer", afirmou o fundador da MBI em uma entrevista à revista brasileira EXAME, com importantes repercussões em termos de divulgação do projeto.
THE MBI TEAM
Meet the people
Text & translation
Press and PR
THE WORDS OF A FATHER
To restore hope
I have a long history with cancer. Over two decades ago, I found myself battling chondrosarcoma, a rare, serious type of malignancy. Thus began a complex journey – one of sometimes inexplicable ups and downs, highs and lows – but every step of the way, I felt a growing urge to be able to change the course of this disease.
I invite you to learn more about the Initiative and to engage in this unique effort, which will restore hope and save the lives of thousands of children.
After all, as the Talmud says — “Whoever saves one life, saves the world entire”.
Founder, The Medulloblastoma Initiative Member, Board of Directors, Cyrela Brazil Realty MBA, Fundação Dom Cabral MBA, MIT Sloan School of Management