Advancing DIPG Awareness with NORD
Marcelo Ramalho-Ortigao has played a key role in filling a long-standing gap by helping create a detailed medical report on DIPG through NORD, offering families and doctors much-needed clarity and resources. His dedication ensures that those facing this rare brain cancer now have reliable information and support at a time when it’s needed most.
Honoring Marcelo’s Contribution to the DIPG Community
Marcelo’s work, which honors the memory of his daughter Juliana, ensures that newly diagnosed families will no longer face an empty page …
Marcelo Ramalho-Ortigao, DSc/PhD, Medical and Science Advisor, DIPG Advocacy Group, and Board Members
The Marc Jr Foundation is proud to recognize the outstanding work of our board member, Marcelo, who has collaborated with the National Organization for Rare Disorders (NORD) to create a comprehensive medical report on Diffuse Intrinsic Pontine Glioma (DIPG).
For many years, DIPG was listed on NORD’s website without detailed information. Families facing this devastating diagnosis were left without clear guidance at a time when answers matter most. Marcelo identified this critical gap and dedicated his time and expertise to addressing it.
The result is a carefully researched, science-based report that provides:
- An overview of DIPG and how it affects patients
- Insight into the population impacted by this disease
- Current treatment options and potential therapies
- Resources that families and clinicians can rely on
Marcelo’s work ensures that newly diagnosed families will no longer face an empty page but instead have access to accurate, trusted information when they need it most His contribution reflects both compassion and commitment to advancing the mission of the Marc Jr Foundation: supporting families, raising awareness, and driving progress against DIPG.
We are deeply grateful to Marcelo for this important achievement and proud to see his work featured by NORD.
You can read the full report on NORD’s website here:
Modernizing Pediatric Clinical Trials for the 21st Century Cures Act
Diffuse Intrinsic Pontine Glioma (DIPG) remains one of the deadliest pediatric cancers, with an average survival of just nine months and virtually no long-term survivors. Despite medical advances in other childhood cancers, DIPG treatment has not meaningfully changed since the 1960s.
Our white paper presents a bold, patient-centered solution: integrating telehealth into pediatric clinical trials. By modernizing trial access in alignment with the 21st Century Cures Act, we can remove geographic barriers, reduce exclusion rates, increase participation, and give more children access to promising therapies—without forcing families to endure exhausting and costly travel.
This is not just about technology. It’s about equity, compassion, and accelerating hope for families facing an unimaginable diagnosis.
Julianna’s Mission: The DIPG Research Podcast is hosted by Dr. Marcelo Ortigao
This podcast brings together researchers, foundations, clinicians, and families to explore the latest scientific advancements in pediatric brain cancer research. Each episode features expert interviews, meaningful conversations, and live Q&A sessions designed to help parents and caregivers better understand treatment options, clinical trials, and emerging breakthroughs.
By sharing insights from both medical professionals and families navigating these challenges, the podcast provides a deeper, more practical perspective on the evolving landscape of pediatric brain cancer care.
Julianna’s Mission: The DIPG Research Podcast is hosted by Dr. Marcelo Ortigao, her father who turned unimaginable loss into purposeful action after his daughter Julianna passed away from DIPG (Diffuse Intrinsic Pontine Glioma).
The Reality of DIPG: Rare, Deadly, and Time-Sensitive
Diffuse Intrinsic Pontine Glioma (DIPG) is called “rare,” yet over 400 U.S. children die from it each year. Long-term survival is nearly zero, unchanged since the 1950s. Unlike other pediatric cancers, DIPG is always fatal at diagnosis.
Despite being the deadliest pediatric brain tumor, only 0.005% of the National Cancer Institute’s budget goes to research. Each child receives far less funding than needed for breakthroughs. This is not rare — it is neglected.
We advocate for modernized trials, flexible regulations, expanded telehealth, and stronger pediatric drug investment. Children facing DIPG cannot wait.
Financial Disclosure Statement
The Marc Jr Foundation is committed to transparency and accountability in its financial practices. In compliance with the National Organization for Rare Disorders (NORD) membership requirements, we make our financial information available to the public upon request. You may obtain a copy of our IRS Form 990, our annual report, or other appropriate information regarding our financials, income, expenses, programs, and beneficiaries by contacting: info@marcjr.org