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OUR PURPOSE

A reason
to believe.

A reason to
exist.

MEET THE MEDULLOBLASTOMA INITIATIVE

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.

Our ecosystem

SUPPORTERS | DONORS | MEDIA

THE
MEDULLOBLASTOMA
INITIATIVE

  • Leading the process
  • Fundraising
  • Awareness raising

CHILDREN’S NATIONAL HOSPITAL

  • Operational support
  • Fundraising
  • Scientific coordination

THE CURE GROUP 4 CONSORTIUM

13 labs in the US, Canada, and Germany

  • Research
  • Development
  • Clinical trials

THE CURE

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.

TIMELINE

MBI milestones

June 2021

Based on Dr. Roger J. Packer’s vision, The Medulloblastoma Initiative (MBI), is created with support from a founding donation of USD 3 million.

July 2021

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.

August 2021

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.

September 2021

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.

December 2021

Dr. Tobey McDonald joins the Consortium to work with molecularly targeted therapies.

The year 2021 ends with USD 5 million raised.

US$ 5 mi

January 2022

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.”

March 2022

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.

April 2022

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.

May 2022

The first face to face Consortium workshop is was held at the Children’s National Research & Innovation Campus, in Washington DC.

July 2022

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.

September 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.

October 2022

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.

November 2022

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.

December 2022

The year 2022 ends with USD 8 million raised.

US$ 8 mi

January 2023

Dr. Wechsler-Reya's lab moves to Columbia University, where the team will continue the Consortium's essential work.

March 2023

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.

June 2023

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.

July 2023

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.

August 2023

MBI launches an effort to engage scientific partners in Brazil for the planning of clinical trials.

June 2021
Based on Dr. Roger J. Packer’s vision, The Medulloblastoma Initiative (MBI), is created with support from a founding donation of USD 3 million.
July 2021
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.
August 2021
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.
September 2021
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.
December 2021
Dr. Tobey McDonald joins the Consortium to work with molecularly targeted therapies.
The year 2021 ends with USD 5 million raised.

US$ 5 mi
January 2022
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.

.
March 2022
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.
April 2022
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.
May 2022
The first face to face Consortium workshop is was held at the Children’s National Research & Innovation Campus, in Washington DC.
July 2022
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.
September 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.
October 2022
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.
November 2022
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.
October 2022
The year 2022 ends with USD 8 million raised.

US$ 8 mi
January 2023
Dr. Wechsler-Reya's lab moves to Columbia University, where the team will continue the Consortium's essential work.
March 2023
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.
June 2023
The most important highlight of the Consortium's second face-to-face workshop was the announcement that the advances made by the group will enable the planning of two clinical trials, to be launched in the next 6 to 8 months.

The MBI case is presented live as part of the Ideas Made to Matter session at the 2023 MIT Sloan Alumni meeting.

"Children shouldn't have cancer," said the founder of MBI in an interview with the Brazilian magazine EXAME, which had important repercussions in terms of publicizing the project.
July 2023
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.
August 2023
MBI launches an effort to engage scientific partners in Brazil for the planning of clinical trials.

THE MBI TEAM

Meet the people

Businessman from Rio Grande do Sul and in 2021 founded The Medulloblastoma Initiative, created to accelerate the development of a cure protocol for this childhood cancer. Fernando is married, has 2 children and has a degree in business administration with an MBA from the MIT Sloan School of Management.

Fernando Goldsztein

Founder

He has a 30-year career as a designer, art director, creative director and manager of communication companies. In 2019, he created Cian Marketing e Participações, a brand dedicated to providing inspiration, insight and high-level strategy for companies and their brands.

Mauro Dorfman

Strategic coordination

Journalist specializing in the production, review and translation of scientific texts, with a master's degree from the Postgraduate Program in English at the Federal University of Santa Catarina and currently pursuing a PhD in the Postgraduate Program in Psychiatry: Behavioral Sciences at the Federal University of Rio Grande do Sul. Founder of Scientific LInguagem, where she leads a team focused on textual production and quality and support for researchers and institutions in the health area.

Claudia Buchweitz

Text & translation

Journalist and advertiser, postgraduate in marketing and master in Communication Sciences, with more than 20 years of experience in advertising agencies, in the areas of writing and planning, where she worked with large advertisers from different sectors, such as telecommunications, retail and health , among others. Added to this are more than 10 years of experience as a teacher in the area of ​​communication, in undergraduate and lato sensu postgraduate courses.

Martina Eva Fischer

Project management

Designer and Developer with 6 years of experience, specialized in social media. Since 2022, combining creative thinking with a strategic vision in the fields of communication and design, with a focus on social causes. Works across various contexts, seeking to understand what is most relevant to each business, delivering personalized and effective solutions

Iago Paz

Development and design

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”.

Fernando Goldsztein

Founder, The Medulloblastoma Initiative Member, Board of Directors, Cyrela Brazil Realty MBA, Fundação Dom Cabral MBA, MIT Sloan School of Management

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.

At the start of my journey, during two months of intensive treatment in Houston, Texas, I witnessed the battles of many others who came from all over the world to fight for their health. Some didn’t make it. Fortunately, my story had a different ending, and I was able to resume a normal life.

A few years after my treatment was complete, I experienced an infinitely more dramatic shock. My eldest son – 9 years old at the time – was diagnosed with medulloblastoma, a malignant brain tumor of childhood. Although it is considered rare, medulloblastoma affects around 30,000 children worldwide each year. When this type of cancer comes back, and doctors have no treatment plan to recommend, and the odds of survival are below 5%.

Thanks to the financial means at my disposal and the support of my family, we were able to seek treatment at leading international centers. And it was at this time that I met one of the world’s most authoritative pediatric neuro-oncology specialists: Dr. Roger Packer. Under Dr. Packer’s guidance, my son has participated in test protocols for the treatment of recurrent medulloblastoma. We have enjoyed access to the best that medicine can offer, albeit on an experimental basis.

Over the course of this journey, the anguish I felt when thinking about the suffering of so many children became the driving force for one of the most important decisions of my life: focusing my energy on the fight against childhood cancer. This decision took shape in 2021, with the project that is now called The Medulloblastoma Initiative. Co-designed with Dr. Packer and his team, the Initiative convenes a group of world-class scientists and institutions, harnessing the necessary power to finally understand this disease. Our goal is simple: to speed the development of a curative protocol that will save the lives of thousands of children around the world.

A historic achievement of such magnitude would not be possible without the support of as many major partners as we can engage. The initial funding for this research was provided by my own family. In recent months, other donors have joined us. We are now trying to raise awareness of this project so that more people can take part in the effort to find a cure for this form of pediatric medulloblastoma.

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”.

Fernando Goldsztein

Founder, The Medulloblastoma Initiative Member, Board of Directors, Cyrela Brazil Realty MBA, Fundação Dom Cabral MBA, MIT Sloan School of Management