The idea of the B4B Foundation was proposed in Venice, Italy, in June 2006 during the Biannual International Symposium on Mucopolysaccharidoses and related diseases. On that occasion about 1000 scientists, physicians and families came together to share updates on rare diseases and in particular on lysosomal storage disorders (LSDs) and their associated problems. It was the first time that a specific Blood Brain Barrier Workshop in the context of LSDs was held.
It then became clear that there was a clear need to structure the collaboration between basic scientists and clinicians to improve achievements in health research addressed to meet the needs of patients affected by rare neurological diseases.
Further to more discussions B4B was formally founded in March 2007 as a task force of experts in neurodegenerative disorders. A second symposium followed in Madrid which was concluded with a general discussion on the way forward in improving front-line treatment for and reversing the neurodegenerative process seen in many of these diseases. The unanimous resolution from the Madrid meeting was that a European Consortium named the “European Task Force on Brain and Neurodegenerative Lysosomal Storage Diseases” (B4B) should be set up.
A number of BioTech Pharmaceutical Companies supported the establishment of the consortium, which is increased over the years. B4B has also created strong interactions with international patients and carers associations involved in LSDs, and has fostered great collaborations with these groups to disseminate knowledge and coordinate actions at the European and the national level. Many of these organisations dedicated to LSDs in EU Member States currently provide European-wide support to B4B.
B4B also works closely with International Scientific Associations such as the European Study Group for Lysosomal Diseases (ESGLD) and the International Blood Brain Barriers Society (IBBS).
In 2008 B4B became a Foundation and was therefore given charitable status under Italian law. B4B is the first organization bringing together clinicians and researchers sharing their expertise to meet patient’s therapeutic needs.
Since 2008 B4B is a partnership member of the European Brain Council and is increasingly engaged in activities carried out by the European Union and the World Health Organization (WHO).
Very Special Thank You to Our Very Special Friends
Special thanks go to the Italian Pro Roberto Committee and the entire Community of Gavoi (located in central Sardinia, Italy) for their extraordinary help and support. If it were not for all of them we would not have been able to succeed in establishing our Brains for Brain Foundation. In fact, the Foundation could enforce its research activity thanks to munificent donations from this tenacious and generous community.
The Pro Roberto Committee was established in 2006 in Gavoi with the intention of financing the expensive therapies necessary to treat “Robertino”, a child affected by a very rare neurodegenerative disease.
Two years after, the Committee decided to donate to the Brains for Brain Foundation a considerable amount of money to support a strong synergistic action aimed at fighting the rare genetic neurodegenerative diseases of children.
The link between Brains for Brain Foundation and the city of Gavoi is today very strong and solid.
Looking to the future B4B is sincerely committed to strengthen the cooperation and continue top quality research in rare neurodegenerative diseases with the shared goal of improving the treatment and care for Robertino and all the other children affected by a rare neurological disorders, in Europe and around the world. “If we don’t take this responsibility, who will?”