BRAINS FOR BRAIN Onlus Foundation (B4B)

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09/01/2018

THE SAD NEWS OF THE PASSING OF CHRISTINE LAVERY

We were deeply saddened to hear that the brave and inspiring Christine Lavery passed away on Tuesday 19th December 2017 in hospital surrounded by her family, following a brief illness.

Christine has played an outstanding role in our Lysosomal storage diseases community and for the entire field of rare inherited diseases.

Christine tirelessly championed the MPS Society from its very conception in the early 1980s up until her untimely death. She was a formidable lady who cared passionately for every MPS Society member, past and present. Her efforts saw her work with patients, families and professionals all over the world as she dedicated her life to improving the knowledge, advocacy support and clinical outlook for patients with MPS. But she also played a pivotal role as Founder of our Brains for Brain Foundation (B4B) and as active partner of the European Reference Network for rare inherited diseases (MetabERN). In agreement with the spirit of B4B and MetabERN she has collaboratively worked with other patient organizations in Europe to increase patient empowerment and provide patients with access to expert clinical centres, no matter where they lived.

We are so grateful for her contribution, and the support she has given patients and families in a range of other areas, including helping to gain specialist education, disability benefits and respite care, as well as providing support for siblings and carers and for dealing with issues such as bereavement.

We will always remember her as a great, determined, strong and courageous woman, as a person of high ethical and moral character who strongly contributed to increase awareness of, and to raise funds for the support of scientific and clinical research into rare inherited diseases, especially lysosomal storage diseases. She was firmly convinced that organizations alone cannot provide enough funding for such initiatives, and therefore devoted a significant amount of her time trying to actively encourage and enhance collaboration with governments, the European Commission and Parliament, industries and all the important stakeholders that are needed to support further advances in research.

We will never forget her thoughtfulness and kindness, and how she touched our lives. During this time, our thoughts and prayers are with her family and friends.

CHRISTINE LAVERY SHORT BIOGRAPHY

Christine Lavery was appointed Chief Executive of the Society for Mucopolysaccharide and Related Diseases (MPS) in 1993. During her time at MPS, she took the charity to new heights, managing a research budget of over £500,000 per year and a UK-wide advocacy service providing needs-led support to over 1200 children and adults with MPS, their families and professionals, in the areas of home adaptations, special educational needs, access to new therapies, respite care, palliative care and pre- and post-bereavement support. Mrs Lavery served on the Department of Health Advisory Board on Genetic Testing and was the patient representative in the Department of Health National Specialized Commissioning Advisory Group.

Between 1984 and 1993, Mrs Lavery was employed as National Development Officer at Contact a Family, a national UK charity. During this time, she worked with parents and carers to set up over 300 patient support groups for a wide range of specific diseases. In 1991, with the help of a researcher, Mrs Lavery wrote the first edition of the Contact a Family Directory of Rare Diseases and Support Networks, which is now available on the Internet.

Prior to 1984, Mrs Lavery lived in Japan for 4 years with her husband and two children, the eldest of whom was terminally ill with Hunter disease.

During her husband’s tour of duty as First Secretary at the British Embassy, Mrs Lavery worked voluntarily for Save the Children and the International Year of the Child, and organized the first diplomatic sponsored climb of Mount Fuji.

Mrs Lavery was awarded an MBE for her services to metabolic diseases by HM Queen Elizabeth II in the New Year’s Honours List for 2002, and at the 2006 International Symposium on Mucopolysaccharide and Related Diseases received ‘a lifetime award’ from the International MPS Community.

Events

14/03/2017

IT’S BRAIN AWARENESS WEEK!!!

by brains4brain

THE BRAINS FOR BRAIN ONLUS FOUNDATION PROMOTES THE BRAIN AWARENESS WEEK

March 13-19, 2017

Every March, Brain Awareness Week (BAW) unites the efforts of partner organizations worldwide in a week-long celebration of the brain. BAW is a worldwide global campaign promoted by Dana Alliance for Brain Initiatives (Dana Foundation) and European Dana Alliance for the Brain aimed to raise public awareness about the progress and benefits of brain research.

B4B Foundation is one of the official partners of the BAW and every year actively celebrates it joining forces to raise awareness of rare pediatric neurological conditions.

Rare paediatric neurological diseases represent an unknown public health issue in Europe. Overall, there are thousands of rare diseases that affect a large number of people. About four million people in Germany and 30 million in Europe are estimated to suffer under one of 8.000 actually known rare diseases. But their seldom appearance makes it a great challenge for modern medicine. Often, the diseases are multisystemic and there are no main symptoms. Therefore a complex and interdisciplinary collaboration in diagnosis and treatment is necessary.

Given the general lack of knowledge and expertise about these conditions it’s extremely important to promote awareness, among physicians and general public, about these disorders.

To this aim, B4B, has organized the 11th workshop of “Brains for Brain” (www.brains4brain.eu) which will be held at the Holiday Inn, Frankfurt Airport from 29^th of March to 1^st of April 2017.

Brains for Brain is a research group combining scientists and clinicians working in the fields of blood-brain barrier and neurodegenerative lysosomal storage diseases in order to coordinate research in this area, seek collaborative research grants and improve the therapeutic options for drug delivery to the CNS. The meeting comprises a unique mixture of Clinicians, Scientists, Family and Patient Associations and the Pharmaceutical Companies that are devoted to the understanding and treatment of these orphan diseases and other inherited neurometabolic neurodegenerative diseases.

Particular relevance will be given in the workshop to pathophysiology and translational activity together with the relationships of B4B with important European institutions and international family associations.

The aims of the 11th Meeting of the Brains For Brain Foundation are to discuss:

Research achievements in the field of neurodegenerative diseases, in particular lysosomal storage disorders (LSDs) at clinical and basic science level and in the field of Blood Brain Barrier;
New recent advances on natural history and pathophysiology of LSDs;
Factors which control the entry into the brain of medicines and other therapeutic agents which may be helpful in treating central nervous system disease;
How B4B and the European Union might collaborate to stimulate interest on research in rare diseases, and specifically we will have a session regarding the vision, the mission and the goals of European Reference Network for hereditary metabolic diseases (MetabERN) which is lead by Maurizio and involves 69 EU nationally certified Healthcare Providers from 18 countries. And we think that B4B will surely play an important role also in this project.
The role of the industries in driving innovation for new therapeutic approaches for true unmet needs.

The establishment of an open dialogue among patients affected by rare diseases and their families, together with public authorities, researchers, health professionals, industry representatives and anyone who has a genuine interest in rare diseases constitutes an important strategic action for overcoming the knowledge gap in the field of rare diseases.

B4B firmly believes that it is fundamental to manage rare diseases in an expert multidisciplinary setting where research, knowledge and expertise are easily shared, assuring the best health outcomes for each patient.

Stay tuned for more updates

Events

12/03/2016

BRAIN AWARENESS WEEK

by brains4brain

THE BRAINS FOR BRAIN ONLUS FOUNDATION PROMOTES THE BRAIN AWARENESS WEEK
March 14-20, 2016

B4B Foundation is one of the official partners of the BAW and every year actively celebrates it joining forces to raise awareness of rare pediatric neurological conditions.

Given the general lack of knowledge and expertise about these conditions it’s extremely important to promote awareness, among physicians and general public, about these disorders.

To this aim, B4B, which is also the organisation leading the Inherited NeuroMetabolic Diseases Information Network (InNerMeD-I-Network) project (www.innermed.eu), has organized the B4B & INNERMED meeting that will take place at the Hotel Rafael Atocha in Madrid, Spain, on March 16-19, 2016.

The programme will contain scientific and strategic sessions in which we will discuss:

1. Research achievements in the field of neurodegenerative diseases;

2. New recent advances on diseases natural history and pathophysiology ;

3. Factors which control the entry into the brain of medicines and other therapeutic agents which may be helpful in treating central nervous system disease;

4. How B4B and InNerMeD partners might collaborate with the European Union to stimulate interest on research in rare neurological diseases;

5. The role of the industries in driving innovation for new therapeutic approaches for true unmet needs.

Moreover, the programme includes a Plenary Session to mark the retirement of David Begley. This special session will reflect David’s major scientific contributions, and will consist of a mix of review lectures and contributions on new developments on Blood Brain Barrier and the delivery of therapeutics to the brain.

The establishment of an open dialogue among patients affected by rare diseases and their families, together with public authorities, researchers, health professionals, industry representatives and anyone who has a genuine interest in rare diseases  constitutes an important strategic action for overcoming the knowledge gap in the field of rare diseases.

B4B and InNerMed firmly believe that it is fundamental to manage rare diseases in an expert multidisciplinary setting where research, knowledge and expertise are easily shared, assuring the best health outcomes for each patient.

Stay tuned for more updates

T download the scientific programme of the event click here :Brains For Brain 2016

Events

25/02/2016

B4B IS A FRIEND OF RARE DISEASE DAY!

by brains4brain

B4B IS A FRIEND OF RARE DISEASE DAY!

Celebrated on the last day of February–the rarest day on the calendar–this is the one day every year when the world comes together to improve the lives of people living with rare diseases.

On 29th February 2016 the international rare disease community celebrates the ninth Rare Disease Day, coordinated by EURORDIS.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. The political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries. Even though the campaign started as a European event, it has progressively become a world phenomenon, with the USA joining in 2009, and participation in over 80 countries around the world in 2015. This number will hopefully increase with many new partners in 2016. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.

The Rare Disease Day 2016 theme “Patient Voice” recognises the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers. The Rare Disease Day 2016 slogan “Join us in making the voice of rare diseases heard” appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.

B4B welcomes this initiative and is pleased to contribute to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Due to the fragmentation of knowledge, it can take years before a patient affected by rare diseases get diagnosed. B4B considers the promotion and the coordination of Research extremely important for health care system, and particularly for Rare Diseases, since they represent the tools by which speed up the achievements of results in research and benefits for patients. This year Rare Disease Day encourages us to continue finding ways to work together to provide the different kinds of care that people living with a rare disease need.
B4B has done and will continue to do big efforts in order to encourage clinicians to work together in the most effective and efficient way in order to produce the best health outcomes for the patients.

For more info about the rare disease day please visit http://www.rarediseaseday.org/

Events

16/03/2015

BRAIN AWARENESS WEEK

by brains4brain

THE BRAINS FOR BRAIN ONLUS FOUNDATION PROMOTES THE BRAIN AWARENESS WEEK
March 16-22, 2015

B4B Foundation is one of the official partners of the BAW and every year actively celebrates it joining forces to raise awareness of rare pediatric neurological conditions.

Given the general lack of knowledge and expertise about these conditions it’s extremely important to promote awareness, among physicians and general public, about these disorders.

To this aim, Brains for Brain Foundation (B4B), in collaboration with the Center for Rare Diseases (CRD) at HSK, Dr. Horst Schmidt Kliniken in Wiesbaden, is organizing awareness-raising activities aimed to reach different audiences and involve them in interactive communication activities about rare diseases, the challenges encountered by those affected, the difficult in getting a final diagnosis, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients’ lives. The establishment of an open dialogue among patients affected by rare diseases and their families, together with public authorities, researchers, health professionals, industry representatives and anyone who has a genuine interest in rare diseases constitutes an important strategic action for overcoming the knowledge gap in the field of rare diseases. B4B and CRD firmly believe that it is fundamental to manage rare diseases in an expert multidisciplinary setting where research, knowledge and expertise are easily shared, assuring the best health outcomes for each patient.

Stay tuned for more updates

Events

21/02/2015

IT’S RARE DISEASE DAY TODAY!!!

by brains4brain

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B4B IS A FRIEND OF RARE DISEASE DAY!

Celebrated on the last day of February–the rarest day on the calendar–this is the one day every year when the world comes together to improve the lives of people living with rare diseases.

The 28th February 2015 marks the eighth international Rare Disease Day coordinated by EURORDIS and preparations are already getting underway in many areas. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

The political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world phenomenon, with the USA joining in 2009, and participation in a record-breaking 84 countries around the world in 2014 and hopefully many more will join in 2015. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.

The theme of Rare Disease Day 2015 is “Living with a rare disease” – paying tribute to the millions of families whose daily lives are impacted, and who are living day-by-day, hand-in-hand with rare disease patients.

The slogan Day-by-day, hand-in-hand of the Official Rare Disease Day 2015 Video evokes the solidarity between families, patient organisations and communities.

For more info about the rare disease day please visit http://www.rarediseaseday.org/

Events

20/02/2014

RARE DISEASE DAY

by B_467ibrain

B4B is a friend of RARE DISEASE DAY
28 February 2014

28 February 2014 marks the seventh international Rare Disease Day coordinated by EURORDIS.
On and around this day hundreds of patient organisations from more than 70 countries and regions worldwide are planning awareness-raising activities around the slogan “Join Together for Better Care”.
B4B welcomes this initiative and is pleased to contribute to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Due to the fragmentation of knowledge, it can take years before a patient affected by rare diseases get diagnosed. B4B considers the promotion and the coordination of Research extremely important for health care system, and particularly for Rare Diseases, since they represent the tools by which speed up the achievements of results in research and benefits for patients. This year Rare Disease Day encourages us to continue finding ways to work together to provide the different kinds of care that people living with a rare disease need.
B4B has done and will continue to do big efforts in order to encourage clinicians to work together in the most effective and efficient way in order to produce the best health outcomes for the patients.

For more info about the rare disease day please visit http://www.rarediseaseday.org/

Events

18/02/2014

BRAIN AWARENESS WEEK

by B_467ibrain

THE BRAINS FOR BRAIN ONLUS FOUNDATION PROMOTES THE BRAIN AWARENESS WEEK
March 10-18, 2014

Every March, Brain Awareness Week (BAW) unites the efforts of partner organizations worldwide in a week-long celebration of the brain. BAW is a worldwide global campaign promoted by Dana Alliance for Brain Initiatives (Dana Foundation) and European Dana Alliance for the Brain aimed to raise public awareness about the progress and benefits of brain research.
B4B Foundation is one of the official partners of the BAW and every year actively celebrates it educating the public about the wonders of the brain and the nervous system and organizing a series of conferences, focused on the understanding of pathophysiology and therapy for neurodegenerative disorders, throughout which participants can learn from top neuroscientists news on latest scientific findings on Brain and Brain related diseases.

Events

17/02/2014

SCIENCE AND INNOVATION: CLOSER THAN RARE!

by B_467ibrain

Brussels – 17th February 2014
B4B ATTENDED THE WORKSHOP
“SCIENCE AND INNOVATION: CLOSER THAN RARE!”

With the purpose of impacting the Institutional Leaders and the Society to the problem of rare diseases and encouraging constructive action on the part of policy makers, B4B actively participated to the Workshop “SCIENCE AND INNOVATION: CLOSER THAN RARE!” held at the European Parliament in Brussels on 17th February 2014.
The workshop, hosted by MEPs Maria da Graça CARVALHO, and Mario DAVID under the patronage of the Presidency of the Portuguese Republic, First Lady of Portugal Maria Cavaco Silva, was also attended by Tonio BORG, Commissioner for Health and Consumer Policy, European Commission.
During the meeting it was generally agreed that much of European research lacks overall coordination and remains a little fragmentary.
One of the big challenges with rare disease is diagnosis.
Diagnosing a rare diseases is in fact often a long and complex process. This is mainly due to the fact that scientific knowledge is generally insufficient and scattered. The development of joint actions and collaborative efforts were encouraged since cooperation is the crucial key necessary to overcome the gaps in research in the area of rare diseases in EU.
It was highlighted the importance of pooling knowledge, resources and expertise on rare diseases, funding related research and authorising the best possible medicines for these diseases.
Participants agreed to continue their hard work so that in the near future, each and every patient affected by a rare disease can access the best possible diagnosis and care.