Archive News 2012

Thursday, 26 July 2012 00:00

UMDF and Mitocon become grant partners

The United Mitochondrial Disease Foundation (UMDF) and its counterpart from Italy, MITOCON, have entered into a collaborative relationship that will benefit the global mitochondrial community. The agreement between the UMDF and MITOCON allows the two organizations to collaborate on the funding current and future research grants, to share information about the affected community, and to mutually participate in international meetings held by each organization.

Tuesday, 17 July 2012 00:00

IMP member of Eurordis

This month IMP has become a full member of Eurordis, the European Organisation for Rare Diseases. With more than 500 direct member organisations, Eurordis is now recognised and listened to as the European organisation specialised in the needs of patients with rare diseases. IMP supports the belief that bringing together all patient associations will provide people with rare diseases with a strong and unique voice. For information on Eurordis: www.eurordis.org

Douglas C. Wallace, PhD, a pioneering genetics researcher in the USA who founded the field of mitochondrial genetics in humans, will receive the 2012 Genetics Prize of The Gruber Foundation. Wallace is being honoured with this prestigious international award for his groundbreaking achievements in helping science understand the role of mitochondria-the "power plants" of cells-in the development of disease and as markers for human evolution.

The University of Nijmegen, the companies Khondrion and Mercarchem and three patientorganisations (VSN, VKS and IMP) have, as a consortium, received a grant of three million euros from the Dutch authorities (ZonMW). With the grant the parties involved aim at developing a treatment for the MELAS syndrome, a serious mitochondrial disorder which affects children as well as adults.

In recent years, the conviction that patients registers are valuable tools to support scientific research and to define policies to support families has grown. With respect to mitochondrial disorders many national registries have been developed over time, with different degrees of success and on the basis of different set-ups.

At the initiative of IMP rehabilitation specialists in Italy and The Netherlands are cooperating in research into a possible development of a common rehabilitation standard for mitochondrial patients. As long as there is no definite therapy or medication for mitochondrial disorders, there should be a rehabilitation standard for all countries in the world to be used by rehabilitation specialists, physical therapists and others. IMP strongly advocates that the knowledge and experience which is now present in this respect should officially be established in a guideline, a standard, to be used by specialists working with mitochondrial patients. The development of such a standard is by no means an easy job because the group of mitochondrial patients shows many varieties in symptoms. There is no 'standard' patient. Yet, IMP found a number of rehabilitations specialists willing to look into the possibilities. A start is now being made for children with mitochondrial disease. We will keep you informed about the progress.

Friday, 13 January 2012 09:54

Extra funds in UK for mito research centre

In the United Kingdom a new £5.8 million research centre is to be set up that will continue research the MDC has funded in Newcastle over the past 11 years. This research led by Professor Doug Turnbull involves a type of IVF to prevent mitochondrial diseases being passed from mother to child. This technique has proven successful in the laboratory but further research is required before it can be tested in a clinical trial. With this fund the new Wellcome Trust Centre for Mitochondrial Research will allow the researchers to take this research forward.

For more information: www.muscular-dystrophy.org

In a new project, funded by MDC, Dr Shamima Rahman at the University College London Institute of Child Health aims to identify new genetic changes causing mitochondrial diseases. This will provide a more accurate diagnosis for people with these conditions, helping clinicians provide better information about how the disease will progress as well as being able to give better family planning advice. Currently up to 80 percent of patients with mitochondrial disease do not receive a specific genetic diagnosis. The lack of a genetic diagnosis leads to great uncertainty about how the disease will progress and whether it might be passed on to future generations. Most importantly, lack of understanding of the precise causes is inhibiting the development of new and effective therapies for these currently incurable diseases. For more details: www.muscular-dystrophy.org

Monday, 07 February 2011 00:00

Nitrate improves mitochondrial function

The spinach-eating cartoon character Popeye has much to teach us, new research from the Swedish medical university Karolinska Institutet shows. The muscles'cellular power plants - the mitochondria - are boosted by nitrate, a substance found in abundance in vegetables such as lettuce, spinach and beetroot. "The mitochondria play a key role in cellular metabolism,"says Professor Eddie Weitzberg, who is heading the study with Professor Jon Lundberg. "Improved mitochondrial function probably has many positive effects on the body, and could explain some of the health benefits of vegetables.