Paradifference Foundation Uk

Quick Stats

• Annual Giving: £543,000 (2023-24 charitable activities expenditure)
• Grant Range: £19,000 - £472,000 EUR/GBP
• Decision Time: Not publicly disclosed
• Geographic Focus: International (UK, Europe, USA)
• Total Income: £1,624,830 (2023-24)
• Application Process: Invitation only/no public application process

Contact Details

Address: One Bartholomew Close, London EC1A 7BL

Email: paradifference@gmail.com

Phone: +44 757 2290523 (Amanda), +32 475 563186 (Anna-Karin)

Website: www.paradifference.org

Overview

The Paradifference Foundation UK was established in 2020 as a Charitable Incorporated Organisation (Charity Number 1189004), building on the original Swedish foundation created by the Gustavsson family in February 2014. The foundation was born from the family's personal experience when their daughter Amanda developed paraganglioma tumours in 2008, which later metastasised to her bones due to an SDHB genetic mutation. With total income of £1.6 million and charitable expenditure of £543,000 in 2023-24, the foundation has become a significant international funder of specialised medical research. They support cutting-edge research into paraganglioma and pheochromocytoma, particularly malignant forms caused by SDHB mutations, funding projects at leading institutions including Oxford University, Mayo Clinic, Karolinska Institutet, and the NIH. Their strategic approach focuses on supporting collaborative, multi-year research with clear objectives and timelines that advance understanding of disease mechanisms and therapeutic targets.

Funding Priorities

Grant Programs

The foundation provides substantial multi-year research grants ranging from approximately £19,000 to £472,000, with most projects funded for 3-5 year periods. Recent and ongoing projects include:

Current Projects (2024-2027):

• Investigating the developmental origins of HIF-2α driven paragangliomas with Prof Sir Peter J Ratcliffe at University of Oxford (2024-2027)
• Drivers of sympatho-adrenal fates controlling phenotypes of malignant cells in pheochromocytoma with Dr Igor Adameyko at Karolinska Institutet, Stockholm (2023-2025)
• Novel therapeutic approaches in collaboration between UTHSA, UCLA, and MDACC (2023-2026)
• SDHB-SDHD gene variants study with Dr Jean-Pierre Bayley at Leiden University Medical Center (2023-2024)

Completed Major Projects:

• Treatment of a mouse model of carotid paraganglioma with HIF-2α antagonist PT2385 with Prof Sir Peter J Ratcliffe at Oxford (2019-2022, £393,000)
• Zebrafish models for therapeutic targets at Radboud University Medical Center (2019-2023, €472,000)
• Born to Sense research using single cell technology at Ludwig Institute for Cancer Research, Stockholm (2020-2023)
• Consortium SDHB-Related Metastatic Pheochromocytoma and Paraganglioma research with Prof Hans Clevers at Hubrecht Institute, Netherlands (2017-2020, €291,500)

Application Method: Invitation only - no public application process

Priority Areas

The foundation exclusively funds research focused on:

• Paraganglioma and pheochromocytoma, particularly SDHB-related malignant forms
• HIF-2α (hypoxia-inducible factor) pathways and therapeutic targets
• Genetic mechanisms (SDHB, SDHD mutations)
• Metabolic pathways and synthetic lethal approaches
• Zebrafish and mouse disease models
• Novel therapeutic interventions including drug repurposing
• Single-cell genomics and developmental biology approaches
• Cellular stress responses as therapeutic targets

Research Selection Criteria (from foundation website):

• Clear and specific research purpose
• Defined timeline
• Constructive contribution to finding a cure
• Willingness to share research and results
• Collaborative approach

What They Don't Fund

• Research outside paraganglioma/pheochromocytoma field
• Non-research activities
• Clinical care or patient support services (though founded from patient experience)
• General cancer research not specific to their disease focus

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Governance and Leadership

Trustees (all appointed 19 December 2019):

Anna-Karin Gustavsson - Chair

Anna-Karin is one of the founders of the Paradifference Foundation and mother to Amanda. The family founded the foundation after Amanda's diagnosis and subsequent metastasis. Contact: +32 475 563186

Anna Amanda Marcusdotter Düsing - Trustee

Amanda is the inspiration for the foundation, having been diagnosed with paraganglioma in 2008 that later metastasised to her bones. She serves on the Board of Directors of the Pheo Para Alliance, an international patient advocacy organisation. Contact: +44 757 2290523

Claes Marcus Lennart Gustavsson - Trustee

Father of Amanda and co-founder of the foundation with his wife Anna-Karin.

Professor Randall Scott Johnson Ph.D - Trustee

Professor of Molecular Biology and the Biology of Hypoxia at the Department of Cell and Molecular Biology at Karolinska Institutet, Stockholm, Sweden. Prof Johnson is an internationally leading scientist in hypoxia research and serves on the Nobel Assembly (the committee that selects Nobel Prize winners in medicine and physiology). In 2019, he presented the Nobel Prize to scientists whose work on hypoxia was similar to his own research. His laboratory uses genetic models to study hypoxia-inducible factors (HIFs) in cancer and other diseases, directly relevant to paraganglioma research. He has demonstrated that immune cells adapt depending on oxygen availability, with implications for understanding tumor progression.

Governance: No trustees receive any remuneration, payments, or benefits from the charity. The foundation has no trading subsidiaries and no employees earning over £60,000.

Application Process and Timeline

How to Apply

This funder does not have a public application process. The foundation operates through a strategic, invitation-based model where trustees and scientific advisors proactively identify and select research projects rather than accepting open applications.

Grants are awarded based on trustee discretion and scientific review, with projects selected through the foundation's network of medical professionals and researchers in the paraganglioma/pheochromocytoma field. The foundation works directly with leading researchers and institutions to determine which projects to fund.

Getting on Their Radar

The foundation funds researchers at major academic institutions who are already established in the field of paraganglioma, pheochromocytoma, HIF biology, or related rare neuroendocrine tumor research. Their funded institutions include:

• University of Oxford (Targeted Discovery Institute)
• Karolinska Institutet, Stockholm
• Mayo Clinic
• NIH Bethesda
• Ludwig Institute for Cancer Research
• Radboud University Medical Center
• Leiden University Medical Center
• CNIO Madrid
• Queen Mary University of London
• The Broad Institute Boston
• University of Birmingham
• INSERM Paris
• University of Florence

Given the presence of Professor Randall Scott Johnson (Nobel Assembly member and HIF expert) on the board, researchers working in hypoxia biology, HIF pathways, and rare neuroendocrine tumors may come to the foundation's attention through academic networks and publications in this specialized field.

The foundation appears to identify projects through board members' connections in the research community, particularly through Prof Johnson's network at Karolinska Institutet and through collaborations in the rare disease research community.

Decision Timeline

Not publicly disclosed. Based on the pattern of funded projects, the foundation appears to make funding decisions throughout the year and commits to multi-year funding periods (typically 3-5 years).

Success Rates

Not applicable - no public application process.

Reapplication Policy

Not applicable - no public application process.

Application Success Factors

Since there is no public application process, the following factors appear important based on the foundation's actual funding patterns:

Research Quality and Focus:

• The foundation funds only the most cutting-edge research at leading international institutions
• Projects must have “clear and specific purpose” and “defined timeline”
• Research must be “deemed constructive in the search for a cure”
• Willingness to share research and results is essential

Institutional Excellence:

All funded projects are at world-renowned research institutions with established track records in rare disease research, cancer biology, or HIF biology.

Research Themes That Have Received Funding:

• HIF-2α biology and therapeutic targets (Oxford, Karolinska)
• Genetic mechanisms and variant studies (Leiden)
• Novel model systems - zebrafish and mouse models (Radboud, Oxford)
• Metabolic approaches and synthetic lethality (Tufts, Birmingham)
• Single-cell genomics and developmental biology (Ludwig Institute)
• Drug repurposing and therapeutic development (multiple institutions)

Principal Investigator Caliber:

Funded PIs include some of the world's leading researchers:

• Prof Sir Peter J Ratcliffe (Nobel Prize considerations for HIF work, Oxford)
• Prof Hans Clevers (renowned stem cell biologist, Netherlands)
• Prof Randall Scott Johnson (board member, Karolinska)
• Multiple other internationally recognized experts

Collaborative Approach:

Several projects involve multi-institutional collaborations, suggesting the foundation values research partnerships and knowledge sharing.

Key Takeaways for Grant Writers

• No public application process: This is a private foundation that strategically selects research projects through trustee discretion and scientific networks rather than open calls
• Highly specialized focus: Only funds paraganglioma and pheochromocytoma research, particularly SDHB-related malignant forms
• International scope with substantial grants: Awards range from £19,000 to £472,000, with multi-year commitments
• Patient-founded mission: The foundation's personal connection to the disease (Amanda Düsing's experience) drives a focused commitment to finding treatments for this rare cancer
• Elite institutional partnerships: All funded projects are at world-leading research institutions
• HIF biology expertise on board: Prof Randall Scott Johnson's presence as trustee suggests particular interest in hypoxia-inducible factor pathways
• Relationship-driven funding: Researchers are identified through academic networks, publications, and connections in the rare neuroendocrine tumor research community rather than competitive applications

References

• Charity Commission Register of Charities, “PARADIFFERENCE FOUNDATION UK - 1189004,” https://register-of-charities.charitycommission.gov.uk/charity-details/?regid=1189004&subid=0 (accessed 27 November 2024)
• Charity Commission Trustees Page, “Trustees, PARADIFFERENCE FOUNDATION UK,” https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/5154794/trustees (accessed 27 November 2024)
• Paradifference Foundation, “Which projects we support,” https://www.paradifference.org/which-projects-we-support/ (accessed 27 November 2024)
• Paradifference Foundation, “About us,” https://www.paradifference.org/ (accessed 27 November 2024)
• Karolinska Institutet, “Randall S. Johnson,” https://ki.se/en/people/randall-johnson (accessed 27 November 2024)
• Pheo Para Alliance, “Amanda Düsing,” https://pheopara.org/team/amanda-dusing (accessed 27 November 2024)
• Journal of Clinical Investigation, “Hif-2α programs oxygen chemosensitivity in chromaffin cells,” research acknowledgment of Paradifference Foundation funding (accessed 27 November 2024)
• Mayo Clinic Pure Research Portal, “Characterization and metabolic synthetic lethal testing in a new model of SDH-loss familial pheochromocytoma and paraganglioma,” acknowledgment of Paradifference Foundation support alongside NIH grants (accessed 27 November 2024)
• University of Oxford Target Discovery Institute, research on “Treatment of a mouse model of carotid paraganglioma with the HIF-2a antagonist PT2385” with Prof Sir Peter J Ratcliffe and Dr Tammie Bishop, funded by Paradifference Foundation 2019-2022, £393,000 (accessed 27 November 2024)