In Molecular Interventions verscheen onlangs een artikel van Annette Whittemore
over de tot stand koming en toekomstplannen van het Whittemore Peterson-Institute,
waarbij zij de nadruk legt op het bouwen van bruggen tussen private - en overheidsorganisaties.
The Whittemore Peterson Institute:
Building Bridges through Private and Public Sector Collaboration
Molecular Interventions. June 2010 vol. 10 no. 3: 120-126. doi: 10.1124/mi.10.3.1.
The Whittemore Peterson Institute’s (WPI) publication of its ground-breaking study on October 8, 2009, of
the link between a cancer-related retrovirus, XMRV, and patients with myalgic encephalomyelitis/chronic fatigue syndrome (“ME/CFS”)
brings a desperately needed legitimacy to a complex yet controversial and misunderstood disease (1).
News of this significant association brought hope to millions around the world who have suffered in silence from its devastating effects.
Perhaps, just as important, the discovery of XMRV infection in humans
allows the medical world to construct a testable hypothesis
of how XMRV may cause or contribute to illnesses across a wide spectrum of chronic inflammatory diseases and cancers and
new paradigms of treatment and perhaps prevention.
That the discovery happened in just three years of a small research institute’s existence 1 is almost as amazing as the extraordinary scientific work.
This is the story of how and why the Whittemore Peterson Institute came to be.
It is a story of multiple collaborations at every level,
revealing a blueprint for other groups of dedicated scientists, doctors, and philanthropists to create greater progress
through unique and selfless partnerships across nontradetional boundaries.
Like other philanthropic endeavors, it began as an idea evidenced through personal suffering and acted upon after all other avenues had failed.
The personal decision to commit time and money to build an institute for
patients with neuroimmune diseases
came from a desperate need for medical solutions to a disease
that had been destroying our daughter’s life for over twenty years.
We were also faced with the reality
that experienced physicians were retiring without passing on their knowledge of ME/CFS to new physicians (Box 1).
In addition, the existing medical establishment lacked both knowledge and medical tools
to effectively treat patients who suffered the debilitating effects of this neurological disease 2.
Around the world, those who suffer with ME/CFS have been told that their physical disorder is a manifestation of a psychiatric disease.
Subsequently, these patients may then be denied medical support by their government-run health care programs.
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