One of our Allies in gathering support for research is The Paradifference Foundation. The Gustavsson family formed the foundation in February 2014, after their eldest daughter’s paraganglioma turned metastatic due to a SDHB mutation. The Paradifference Foundation is registered as a non-profit foundation in Sweden, and their aim is to financially support research in the field of paraganglioma and pheochromocytoma — with special regard to malignant para caused by SDHB.
The Paradifference currently supports six projects:
Three projects conducted at the Mayo Clinic in Rochester, Minnesota headed by Dr Jim Maher.
Two projects conducted at LUMC, Leiden University Medical Center, Holland, headed by Dr. Jean-Pierre Bayley.
One project conducted at Lund University, Sweden, headed by Prof. Sven Påhlman and PhD Caroline Wigerup.
To understand the costs of research projects, the Paradifference mapped out examples of some of the costs on their website. For instance:
Research mice cost around $50 each to breed and then $45 a year to maintain. Research nematode worms are around $1,000 a month. Supplies for labs are also around $1,000 per researcher. A single PhD student researcher costs $70,000 a year, and to have a senior biomedical science professor on the team it costs $250,000 per year.
Dr. Jim Maher also recorded a wonderful video to introduce his story, explain his research, and the hopes that their efforts will find a better understanding of pheo and para.
The Paradifference has been an amazing support and ally to the pheo/para community around the world. The ability to provide funding to researchers gives hope for better treatments, faster diagnostic tools, and ultimately a cure.
European Neuroendocrine Tumor Society Conference
Barcelona, Spain March 11-13, 2015
Reported by Vincent Coonen – Netherlands
In March I attended the 2015 European Neuroendocrine Tumor Society (ENETS) conference in Barcelona, Spain. This was my first medical conference so had no clue on what to expect. Registered as a patient association representative I was, to my surprise, allowed full access to all general presentations. There were several presentations on pheo/para and other diseases where patients also can develop pheo/para like MEN. Some of the presentations were easy enough to understand, but others with regards to research that went way too deep for me – even with how much I’ve read about our disease. The latter is positive though. I felt like they were really doing research to understand our disease better, and to find new and better ways to take care of us. This conference was also the location where I heard about the discovery of MDH2, a new familial paraganglioma genetic mutation.
The main reason why I went to the conference was the opportunity to finally meet Allen Wilson (Trooper President) in person. It was a well overdue meeting after about three years of chatting, mailing, and skyping. I also meet with Dr. Isabel Tena Garcia (creator of PheiPas, oncologist, and SDHB carrier) as well as some of her Spanish patients.
Together we discussed the possibilities of patients cooperating in Europe and setting up a kind of sister organization to the Troopers. As Europe consists of more than 50 countries with their own healthcare systems and more than 35 languages being spoken, this is not an easy task. Step one in this process is a first European Pheochromocytoma and Paraganglioma Patient Initiative website, which is under development to let people know we are there and want to connect. There will be much more to come in the near future!