Arquivo de the medulloblastoma initiative - The Medulloblastoma Initiative

Race for Every Child: MBI makes its mark at a very special event

MBI — Fri, 01 Nov 2024 00:29:07 +0000

MBI’s debut participation in the Race for Every Child, organized by our partner, Children’s National Hospital, in Washington, D.C., was absolutely sensational! With the support of our donors and the leadership of MBI partners Elen and Neal Ellis, Team MBI – No Time to Lose stood out among 524 teams and a total of 8,217 participants.

Check out the photos for some of the many beautiful moments from the race.

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Valuable connections – A project born from belonging

MBI — Fri, 25 Oct 2024 18:38:09 +0000

Fernando Goldsztein shares how he had the idea for this project and what he expects from these connections

The II Conexões de Valor, a project created with the help of PUCRS alumni Fernando Goldsztein, is scheduled to occur this month. The first edition was held in 2023. We invited Fernando to tell us a little about how this idea came about:

“I feel honored to have been part of the creation of this important event. It all started with an informal conversation with Rector Evilázio during the inauguration of Túlio Milman as the president of the PUCRS Museum Council. The Rector became interested in the project I founded, the MBI (The Medulloblastoma Initiative). He said: ‘This innovative and transformative project was created by a PUCRS alumnus. We need to find a way to promote the MBI internally and highlight other relevant projects created by our alumni. These examples will serve as important sources of inspiration for young students.’”

Fernando, a PUCRS Business Administration alumnus , believes that this course and the knowledge he gained at the University were key to his professional journey and to his role as leader of a philanthropic organization, the MBI (The Medulloblastoma Initiative). However, he says that it was during an MBA at the MIT Sloan School of Management that he discovered how important the connection between universities and their alumni is.

“The Sloan School organizes a reunion every 5 years for their alumni. In my case, since I graduated in 2003, I am invited to return to MIT for the Alumni Reunion in any year ending in ‘03 or ‘08. It’s a three-day event with special classes, events, and social gatherings. Despite being thousands of miles away, I never miss the opportunity to reconnect with the academic environment, my classmates, and some of my professors.”

In 2023, the MBI was one of three projects selected to be presented to a packed auditorium. “The presentation of alumni projects is just one of the many events held during the MIT Alumni Reunion,” says Fernando. Inspired by his experience at MIT and with the encouragement of PUCRS Rector Evilázio, Fernando came up with the idea of creating an event to foster connection and a sense of belonging among the PUCRS Alumni Network.

“I wanted to create an event that not only reconnects PUCRS alumni but also serves as an inspiration to the younger generation. I am very happy that the ‘Conexões de Valor’ event is holding its second edition. I hope it is the beginning of even stronger connections between PUCRS and its vast network of alumni who are making a difference around the world.”

The second edition of Conexões de Valor will take place on October 17, at 6 p.m., at the FAMECOS Hall (Building 07), with the theme: “The magic of live coverage: strategies and experiences.” Among featured speakers are Cristina Ranzolin, a PUCRS Journalism and Advertising alumna and presenter of Jornal do Almoço, and Vitor Rosa, a PUCRS Journalism alumnus and reporter for RBS TV.

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MATCHPOINT: Has medulloblastoma met its match?

MBI — Fri, 27 Sep 2024 15:03:03 +0000

Duane Mitchell, MD, PhD, co-director of the Preston A. Wells Jr. Center for Brain Tumor Therapy at the University of Florida, is leading the MATCHPOINT trial. The treatment uses adoptive cell therapy, which programs a patient’s T cells (essential white blood cells) to seek out and destroy tumor cells. In a previous trial (ReMATCH), Dr. Mitchell’s laboratory demonstrated promise as a safe and effective treatment for recurrent medulloblastoma. In one patient, widespread metastatic disease was nearly eliminated.

MATCHPOINT will test this technique in a pilot study of six patients with recurrent Group 4 tumors. Dr. Mitchell is looking to expand the effectiveness of adoptive cell therapy by combining it with an immune checkpoint inhibitor. This drug prevents the tumor from defending itself through immune checkpoints. At a checkpoint, the tumor cell binds to an immune cell and sends a stop signal to the attacking T cell. The inhibitor eliminates this line of defense, increasing the effectiveness of the immunotherapy.

“Our ultimate goal is to cure children with brain cancers and to move immunotherapy to the frontline of treatment, to potentially avoid or reduce the toxicity of the standard treatments we currently use,” says Dr. Mitchell. He anticipates patient recruitment in the second half of 2024.

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Trials approved — and starting — in record time

MBI — Wed, 14 Aug 2024 17:40:29 +0000

In just two and a half years, the MBI reached one of its most important objectives: two new clinical trials were approved of potential treatments for relapsed Group 4 medulloblastoma. Both are led by investigators from the University of Florida and funded by the MBI, Dr. Duane Mitchell and (left) and Dr. Elias Sayour.

Each represents the first human trials of their kind:

Trial 1 – also called MATCHPOINT – attacks tumors in two ways: 1) It trains the patient’s own cells to identify and destroy cancer cells; 2) It uses an additional drug to eliminate the tumor’s defense system. MATCHPOINT has already enrolled its first patient, and plans to admit 12 patients over the next two years.

Trial 2 will test an mRNA vaccine – similar to the COVID-19 vaccine, but more personalized because it uses the patient’s own cells. Nanotechnology is used to create the vaccine. Once injected, the vaccine generates a targeted immune response to destroy tumors.

“Recurrent medulloblastoma, in any form, is fatal,” Dr. Sayour said. “We are here to offer hope that we can make a difference.” “The ultimate goal is to cure children with brain cancer and to see immunotherapy treatments become part of the first-line treatment, perhaps avoiding or decreasing the toxicity of the standard treatments we use today,” Dr. Mitchell added.

You can read the full story about the two trials here:
https://mbi.ufl.edu/2024/06/26/uf-researchers-to-test-novel-treatments-for-medulloblastoma/.

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You are invited to the Race for Every Child — Race for Every Child

MBI — Wed, 14 Aug 2024 14:04:06 +0000

It’s a real race in Washington, DC, but you can enter from anywhere in the world — accelerating efforts to raise funds for research and care for children.

Through October 19, you can choose:

Join the MBI Team

Anyone from anywhere in the world can do this, it’s easy and free.
The name of the person who registers will appear on the MBI team page.
You can set your own fundraising goal and encourage all your friends and family to join the campaign
With one registration, you can register all your family members, friends and acquaintances.

Donate to the MBI Team

No need to sign up, just contribute!

About the race

Every year, Children’s National, one of the five largest pediatric hospitals in the United States, hosts a race called Race for Every Child. The race is a major event that takes place in Washington, D.C.

Patients, families, people committed to the cause of children’s health, medical staff, and hospital staff participate in this event that involves a 5K run or walk — to raise awareness for the cause, celebrate engagement, and promote a meeting between donors and recipients of donated resources.

In 2024, the Race for Every Child will take place on October 19, and among the new features is the participation of our initiative in the race, with the MBI-No Time to Lose team.

There’s no time to waste – get involved now!

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A milestone for MBI

MBI — Mon, 22 Apr 2024 19:26:46 +0000

Scientists, academics, researchers, businesspeople and media personalities met last Wednesday (10/04) at the Brazilian embassy in Washington at the invitation of Ambassador Maria Luíza Ribeiro Viotti with a common goal: to strengthen the fight to cure childhood cancer. The mission is led by philanthropist Fernando Goldsztein, from Rio Grande do Sul, who has become one of the world’s leading figures in the battle against medulloblastoma, the most common brain cancer among children. Considered a historic milestone for the cause, the meeting was highlighted in the American press.

The meeting at the embassy focused on the Medulloblastoma Initiative (MBI), a project created by the businessman in 2021 to raise funds to finance research for innovative treatments for the disease. Goldsztein’s dream began when his son Frederico was diagnosed with a brain tumor. Today, MBI has 13 laboratories in the United States, Canada and Germany, with a dream team made up of some of the most renowned scientists and oncologists in the world, such as Eugene Hwang (Children’s National Hospital), Robert Wechsler (Columbia University), Duane Mitchell (University of Florida), Michael Taylor (Texas Children’s Hospital), Vijay Ramaswamy (SickKids), Sheila Singh (McMaster University), Tobey MacDonald (Emory University School of Medicine) and Lena M. Kutscher (Heidelberg University).

Wednesday’s event was hosted by Fox News journalist Bret Baier. Baier, who moderated the panel discussion, is the anchor and executive editor of “Special Report,” considered one of the top five news programs in the United States and the absolute leader in audience ratings during its time slot.

Also present at the Brazilian embassy were representatives from Children’s National Hospital, one of the most renowned pediatric centers in the world and a partner of MBI in the project to cure medulloblastoma. One of the speakers was Roger J. Packer, one of the world’s leading experts in pediatric brain tumors. Packer heads the Cure Group 4 Consortium, created to centralize research development and clinical trials of new therapies and accelerate the search for a cure. CEO Michelle Riley-Brown also participated in the panel, accompanied by DeAnn Aston Marshall, president of the Children’s National Hospital Foundation, and Kathie Williams, a member of the executive board.

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To save a life: Lessons for Launching a Health R&D Initiative

MBI — Wed, 10 Apr 2024 16:45:51 +0000

In February 2024, MBI was featured in eJewish Philanthropy, a news publication covering the world of Jewish philanthropy. The platform features daily discussions through original reporting and thought pieces on pressing issues, highlighting emerging leaders and changemakers with the goal of expanding the conversation about philanthropy.

In the article, Fernando tells the story of MBI and highlights several important points for those who wish to follow MBI’s example to consider.

Read the full article at: eJewishPhilanthropy

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In search of treatment for medulloblastoma

MBI — Wed, 10 Apr 2024 13:28:19 +0000

In March 2024, PUCRS Magazine published a beautiful interview given by alumnus Fernando Goldsztein, Founder of The Medulloblastoma Initiative and Advisor to the Children’s National Hospital Foundation.

PUCRS Journal focuses on the scientific dissemination of articles and research in the areas of human sciences, applied social sciences, exact sciences and other disciplines. It seeks to foster academic debate and drive the advancement of knowledge in various areas of interest, prioritizing especially impactful and innovative initiatives.

Among the topics covered, Fernando spoke about the origins of MBI, the effort to fund research in another country and the urgent need to increase visibility of the most common pediatric brain cancer in the world.

Watch the full interview here (page 44)

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A big step for MBI

MBI — Thu, 14 Mar 2024 20:29:28 +0000

On Wednesday, March 6, the story of the Medulloblastoma Initiative (MBI) was presented to the Permanent Council of the OAS (Organization of American States), in Washington D.C., during the session dedicated to World Rare Disease Day.

MBI was the result of Fernando’s approach to Dr. Roger J. Packer of Children’s National Hospital in Washington, D.C., one of the world’s leading experts in pediatric brain tumors. Today, MBI is a philanthropic initiative that funds a consortium of 13 research laboratories, bringing together renowned scientists from around the world—from the U.S. to Germany and Canada.

For this important meeting, MBI was the organization chosen by the OAS to represent the fight of the 300 million people affected by rare diseases worldwide.

During his speech, Fernando presented MBI’s unique approach to philanthropic engagement and discussed pressing issues such as the toxicity of available treatments for the most common type of pediatric brain tumor and the need for funding for scientific research. He also invited governments, the scientific community and civil society itself to reflect on the relevance of these issues in the context of rare diseases.

It was a great honor for MBI to speak on behalf of millions of people living with rare diseases at this event.

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United Voices at the International Symposium on Pediatric Neuro-Oncology

MBI — Tue, 05 Mar 2024 14:23:28 +0000

Voices united at the International Pediatric Neuro-Oncology Symposium: “In many places around the world, medulloblastoma is still diagnosed as it was almost 100 years ago,” said Dr. Michael Taylor, who opened the event.

“We have to develop better treatments for medulloblastoma,” said Dr. Vijay Ramaswamy — and all the doctors and researchers heard from journalist Daniel Scola, who survived medulloblastoma but still faces side effects.

MBI was also represented at the event — the Initiative’s founder, Fernando Goldsztein, recalled the question he asked Dr. Roger Packer of Children’s National Hospital in 2021: what can we do to advance science? The answer came through philanthropy, which enabled the creation of the Cure Group 4 Consortium, coordinated by Dr. Packer and in which Dr. Taylor and Dr. Ramaswamy participate. Since then, MBI has created a community of support, which also involves people like Scola and all those who understand that philanthropy can change the landscape of science.

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