Which projects we support
Currently, there is no cure for the disease. There are several methods of treatment for individual tumors, and palliative treatment once the tumors have started to spread. It is becoming increasingly difficult for researchers to get funding for this rare disease.
We will prioritize projects that have a clear and specific purpose, a timeline and are deemed constructive in the search for a cure. These projects should already be outlined but need funding in order to proceed. The research centers need to believe in sharing research and results between institutions, and keep up to date with relevant research in both the same and related fields.
Projects we support:
Three projects conducted at the Mayo Clinic, Rochester,Minnesota,USA, by Dr Jim Maher
During 2013-2018
200.000 USD/year
During 2019-2021
100.000 USD/year
Consortium for personalized targeted therapy of SDHB-mutated metastatic paraganglioma and pheochromocytoma
Dr. Zhenping Zhuang, M.D., Ph.D.
NIH, Bethesda, MD, USA
‘Establishment of in vitro/in vivo model for SDHB mutation associated tumors and investigation of therapeutic strategy based on modulating protein folding and stability’
During 2015-2019, 300.000 USD in total
Prof Massimo Mannelli, M.D
University of Florence, Florence, Italy
‘Neural crest-derived tumors and microenvironment: an experimental model to test potential therapeutical targets and drugs in SDHB-mutated paragangliomas’
During 2015-2019, 530.000 EUR in total
Dr. Mercedes Robledo, Ph.D.
CNIO, Madrid, Spain
‘Genomic dissection of SDHB related PPGLs to identify druggable targets and novel therapeutic strategies’
During 2015-2019, 420.000 EUR in total
Prof. Graeme Eisenhofer, Ph.D.
Prof Jens Pietzsch, Ph.D.
Technische Universität Dresden, Dresden, Germany
‘Mitochondrial energy metabolism and downstream Hif2a MycMax pathways and epigenetic methylation as therapeutic targets for SDHB-mutated metastatic chromaffin cell tumors’
During 2015-2019, 630.000 EUR in total
Dr Henri Timmers, M.D., Ph.D.
Prof Peter Deen, Ph.D.
Radboud University Medical Center, Nijmegen, The Netherlands
‘SDHB-related paragangliomas and pheochromocytomas from succinate receptor and zebrafish to man’
During 2015-2018, 750.000 EUR in total
Bridge-funding for Margo Dona, PhD
Radboud University Medical Center
During 2018-2019 45.000 Eur in total
Advisory member: Prof Jacques Lenders, M.D., Ph.D.
Models of paraganglioma: Cell lines and Mouse Models
Dr Jean-Pierre Bayley
Leiden University Medical Center, Leiden, The Netherlands
During 2014-2018, 816.000 EUR in total
Targeting metastasizing paraganglioma by inhibiting HIF-2a transcriptional activity
Dr Sven Påhlman
Caroline Wigerup, Ph.D.
Lunds Universitet, Lund, Sweden
During 2014-2019, 1.500.000 EUR in total
Collaborative Paraganglioma and Pheochromocytoma Short-Term Fellowship at NIH
Dr Joakim Crona
Uppsala Universitet Hospital, Uppsala, Sweden
During 2016, 8.000USD in total
Collaborative research project to investigate the mechanisms of metabolic escape of SDHB defective tumors
Dr Judith Favier, INSERM, Paris, France
Dr Daniel Tennant, University of Birmingham, UK
During 2015-2018, 450.000 EUR in total
Development of a novel biomarker of tumor development in SDHB-mutated patients using in vivo metabolic tracing
During 2017-2020, 445.000 EUR in total
Suppressing the transforming effect of Succinate dehydrogenase mutations in paraganglioma inhibition of a a-Ketoglutarate Dehydrogenase
Dr Susanne Schlisio, PhD
Ludwig Insitute for Cancer Research, KI, Stockholm, Sweden
During 2017-2020 375.000 EUR in total
A5 Genomic Study
Dr Richard Tothill
Peter McCullum Cancer Institute, Melbourne, Australia
During 2017-2019 100.000 USD in total
Consortium SDHB-Related Metastatic Pheochromocytoma and Paraganglioma’s: Creating the Essentials for Targeted Therapy
Prof. Hans Clevers, MD, PhD
Princes Maxima Center, Hubrecht Institute/Royal Netherlands Academy of Science, Utrecht, The Netherlands
‘Generation of Organoids of Human SDHB-mutated PPGLs’
During 2017-2020 291.500 EUR in total
Dr Henri Timmers, MD, PhD
Prof Peter Deen
Radboud University Medical Center, Nijmegen, The Netherlands
‘Human Renal Cells as Model System for SDHB-mutant PPGLs’
During 2017-2020 475.500 EUR in total
Dr Shane Ellis, PhD
Maastricht University,Maastricht,The Netherlands
‘Mapping the metabolic Pathways Thoughout Sdhb-mutated PPGLs’
2017-2020 181.300 EUR in total
Prof Henk Stunnenberg
Radboud Universty Medical Center, Nijmegen, The Netherlands
‘Dissection of the Transcriptional Pathways of SDHB-mutated PPGLs’
During 2017-2020 255.600 EUR in total
Dr Stephanie Fliedner MD PhD
Universitätklinikum Schleswig-Holstein, Lubeck,Germany
During 2017-2020 19.000 EUR in total
‘Single cell analysis of tumor hetrogeneity and differentiation states unlocks new cancer treatments for paraganglioma and pheochromocytoma’
Dr Igor Adameyko PhD
Karolinska Institutet,Stockholm,Sweden
During 2017-2020 230.000 Eur in total
New models of SDH-deficient Pragangliomas and Syndromically Associated Tumors
Dr Arthur Tischler
Tufts Medical Center, Boston, US
During 2017 80.000 USD
A Phenotypically valid model for SDH-deficient paragangliomas with SDHB mutation
During 2019-2020 75.000 USD
Zebrafish leading the way towards therapeutic targets for SDHB-related paragangliomas
Dr Henri Timmers, MD, PhD
Margo Dona PhD
Radboud University Medical Center, Nijmegen, The Netherlands
During 2019-2023 472.000 EUR in total
Treatment of a mouse model of carotid paraganglioma with the HIF-2a antagonist PT2385
Prof Sir Peter J Ratcliffe
Dr Tammie Bishop
University of Oxford, Targeted Discovery Institute, Oxford, UK
During 2019-2022 393.000 GBP in total
Creating a Pheochromocytoma and Paraganglioma Tumor Dependency Map
Collaboration between The Broad Institute, The Paradifference, The Pheo Para Alliance and SDHB Coalition Inc.
The Broad Institute, Boston, US
During 2019-2022 112.000 USD in total
These projects are supported by:
The Gustavsson family
BKS- Berta Kamprad Stiftelse
Jonas and Christina af Jochnick Foundation
Midbec
Jula
Family friends