Friday, April 20, 2012

The International Society for Frontotemporal Dementias has been founded

The following is an email sent out this week from Bernardino Ghetti, MD, neuropathologist at Indiana University:
Dear Friends,
Bernardino Ghetti, MD
In October 2010, I had the distinct privilege to host the 7th International Conference on Frontotemporal Dementias in Indianapolis, Indiana.  Hundreds of you from around the world participated in this exciting meeting.
While the social relevance of frontotemporal dementia (FTD) is recognized, we have lacked a scientific international society devoted to the exchange of knowledge on FTD, facilitation of scientific cooperation, promotion of education, and planning of logistics and financial support.  As you may remember, the idea of organizing an international scientific society of FTD researchers was launched during the 7th International Conference.  This concept obtained an enthusiastic response.
Since that time, many of you have been asking about the status of the society.  I am happy to announce that the legal documents have been filed and the International Society for Frontotemporal Dementias has been founded.  The current board of directors is composed of the following scientists:
Arne Brun MD, PhD                David Knopman MD
Emanuele Buratti PhD             Ian Mackenzie MD
Bernardino Ghetti MD             Marsel Mesulam MD
Murray Grossman MD             Bruce Miller MD
Lars Gustafson MD, PhD         Manuela Neumann MD
John Hodges MD, PhD            Rosa Rademakers PhD
Andrew Kertesz MD                Julie Snowden PhD
                                                                         John van Swieten MD
There is still work to be done, but the society is taking shape and we are currently looking for funding to support a website.  The society will facilitate scientific exchanges between researchers involved in all areas of clinical and basic neuroscience related to frontotemporal dementias and promote scientific discoveries.  As we prepare to open the society for membership, our hope is to reach all of you who have been an active part of the progress for the understanding of FTD and the care of people affected by this devastating disease. Our next step is to develop a website and facilitate the application for membership.  The membership fee will be $200.  Please let us know if you are interested in being a part of the International Society for Frontotemporal Dementias, or would also be interested in serving as part of a committee. 
I am truly convinced that this is a necessary step for the advancement of our knowledge of FTD.  I look forward to working with you in the future.


Bernardino Ghetti, MD
For the Board of the International Society for Frontotemporal Dementias

The International Society for Frontotemporal Dementias can be reached at

1 comment:

Theresa Matthews said...

Perhaps the aging Dr. Ghetti is a little overextended with his many organizational affiliations, frequent scientific publications,and personal research projects. The last time I checked he was still co-director of the NPDPSC, a cash strapped organization from its inception. Furthermore, Indiana remains one of 8 states that still does not mandate CJD reporting.(Too busy to call?)

I imagine that being overextended can cause one to lose sight of the mission. For instance, I wonder how life has really improved for the long studied Indiana kindred? What is their future forecast for 2016 when SSDI runs dry? Has funding for GSS, CJD, or FTD increased? If not, are new public and private sources being sought out? (Prionet Canada has been quite successful in securing rare funding resources in the worst of times and has successfully recruited some of our best scientists. They present to the public and are present. They have learned to successfully capitalize on that effort.)

To the young American problem solvers now embarking on your neurology or neuropathology journey saddled with medical school debt: your active involvement in professional organizations will no doubt shape the direction of prion disease science as well as dementia diagnosis and care. The generation before you has pushed forth the 21st century concepts of genetics, disease and how to "sell" the lofty goal of cure. The generation ahead of you has thrust their
financial,environmental, political, and socioeconomic problems on you in such a way that your children will surely bear the burden.

Hopefully you will carry with you two simple, nearly extinct terms:prevention and environment. These terms will be especially important should you find yourself living around the bend of a blue-green algae pond in VT;on the BitterHarvest PCB/PBB pastures of MI;on a flatbed of PCB contamination in IN; upwind of the active anthracite mine fire in Centralia, PA burning for decades; near Route 66 in what used to be the dioxin contaminated village of Times Beach, MO.

Maybe you will remember that our genes are not the only ones being challenged. Maybe you will then have the foresight to join or create an organization that equally embraces DVM practitioners and pathologists. Maybe your mission will strive to welcome any input from the patient population you aim to represent with respect to strategy and planning so that tiers of ethical analysts are not needed.

There are many famous names and faces dominating prion science in the generation ahead of you. They have often had long and successful careers. They all tried to beat the clock and didn't. Meanwhile Dr. Bernice Eddy ends up in the TSE lab of Dr. Joe Gibbs and posthumously becomes one of the 10 most influential women of science. Then, last week, the UK press acknowledged the passing of neuropathologist, Dr. Wendy Grant who openly challenged the wisdom of SRM's in the food chain. These are 2 people who will be long remembered by society for their active leadership not for their Society membership.

I encourage you all to Be The Change in your organizations. Unfortunately, your clock has begun was reset by the generation ahead of you.