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 The Brains4Brain Foundation is delighted to announce the launch of an ambitious initiative aimed at addressing one of the most critical challenges in healthcare today: the establishment of a concrete ecosystem for rare diseases. To this aim, we are organising a preparatory event to present our project to selected policymakers -other MEPs but also representatives from the European Commission and the Member States – and a wider range of stakeholders within the rare disease ecosystem.

This hearing, titled “Building a Research and Innovation Ecosystem for Rare Diseases”, was initially scheduled on Tuesday, 25 March but due to requests from several stakeholders who expressed a strong interest in participating but had prior commitments, we have decided to postpone the meeting to Tuesday, 29 April, from 14:30 to 16:30 in the European Parliament, Room P4B001 – Bruxelles.

A Collaborative Effort

This landmark event is convened by Vytenis Andriukaitis, Member of the European Parliament (MEP), in partnership with the Brains4Brain Foundation and a diverse coalition of stakeholders. It forms part of the public consultation launched by the European Parliament’s Committee on Public Health (SANT) and aligns with the EU4H-2024-PJ-03 Call under the EU4H Action Grants 2024.

Focus of the Hearing

The hearing is designed to inform future political and policy activities in the rare disease space and will explore the piloting of the Research and Innovation Union concept, as outlined in Draghi’s Report, specifically tailored to meet the needs of individuals living with rare diseases. The objective is to establish a robust ecosystem, anchored in European Reference Networks, fostering collaboration between institutional, public, private, and civil society stakeholders.

Key Objectives

• Promoting Scientific Excellence – Supporting fundamental research and attracting world-class talent in science and innovation.
• Enhancing Industrial Competitiveness – Strengthening partnerships between academia and industry to advance crucial technologies and strategic sectors.
• Implementing a Mission-Oriented Approach – Developing targeted solutions to improve the quality of life for the 36 million Europeans living with rare diseases (PLRD).

The Need for Collaboration

The challenges faced by healthcare providers and patients affected by rare diseases are multifaceted, and fragmented approaches have proven inadequate. There is a pressing need to align financial and non-financial incentives to secure sustainable, long-term investment in rare disease research and development.

This hearing provides a platform for key stakeholders to engage in meaningful dialogue, shaping future policy and political action in the rare disease sector.

The fight against rare diseases requires a unified and strategic approach, leveraging the collective expertise of researchers, policymakers, industry leaders, and civil society. By fostering collaboration and innovation, we can build a sustainable ecosystem that ensures better diagnosis, treatment, and care for millions of individuals. Together, we can drive forward a European Health Union that truly delivers for those affected by rare diseases.

REGISTRATION

If interested, please register through this form. All registrations will be reviewed given the limited room capacity. Confirmed participants will be informed by email.

The Brains for Brain Foundation is pleased to announce the upcoming 2nd “Drug Delivery to the Brain” Keystone Symposium, scheduled for February 17–20, 2025, at the Keystone Resort in Colorado. This conference will be held jointly with the “Antibodies as Drugs” meeting and aims to bring together researchers and professionals from both academia and industry to discuss advancements in drug delivery systems for the central nervous system (CNS).

Following the success of the inaugural symposium in January 2023, which attracted over 200 attendees and featured two keynote talks, 18 plenary sessions, and 12 short talks selected from nearly 70 poster abstracts, this upcoming event promises to be equally impactful. The previous meeting notably achieved a balanced representation of participants from academic and private sectors, fostering collaborative discussions.

The 2025 symposium will be organized by a team of esteemed researchers, including James Gorman from Harvard’s Wyss Institute and Stina Syvänen from Uppsala University, alongside Robert G. Thorne, who will deliver the opening keynote address. Thorne’s talk, titled “Delivery of Therapeutics to the CNS via Different Routes of Administration: An Overview of Applications, Advantages and Disadvantages,” will explore the current state of the field and emerging approaches, highlighting a critical time for CNS delivery research.

With new approvals and advancements in brain-targeted therapies for conditions such as Alzheimer’s disease, multiple sclerosis, and brain cancer on the horizon, this symposium represents an essential gathering for those involved in CNS drug delivery.

Key dates to note include:

• Scholarship and Abstract Submission Deadline: November 26, 2024
• Early Registration Deadline: December 23, 2024
• Poster Abstract Deadline: January 27, 2025

The symposium will also feature multiple awards for junior presenters, sponsored in part by the International Brain Barriers Society, which will honor the scientific legacies of Joan Abbott and Danica Stanimirovic.

The Brains for Brain Foundation encourages all interested parties to consider attending this unique meeting. Collaboration and knowledge sharing are vital for advancing the field, and we look forward to welcoming both returning and new participants.

For further information on registration, abstract submissions, and conference details, please click here

P.S. This is definitely a Keystone Symposium where the mountain will feature with some great skiing for those who might be interested to combine the meeting with winter recreation:

Dear Friends of B4B,

We are excited to announce that we have finalised the program for this special meeting that is taking place at Sidney Sussex College in Cambridge, UK, from September 9th to September 11th, 2024.

You can view the FINAL programme

by clicking on the image below

or you can download it as a PDF  from here.

We look forward to seeing you next week as we come together to honor the memory of Dr. David Begley and revive the important work of the Brains for Brain Foundation.

Dear Friends of B4B,

It has been almost a year since we bid farewell to our dear friend and valued member, Dr. David Begley, the Vice President and Co-Founder of the Brains for Brain Foundation. His absence continues to be deeply felt within our community, and in honor of his memory, we are organizing a special celebration to mark the first anniversary of his passing and the restart of the Brains for Brain Foundation’s activities.

In the spirit of David’s vision and dedication, we aim to once again breathe life into the B4B initiative.

To this end, we are organizing a gathering that not only serves as a high-value scientific meeting but also as an opportunity to bring together all those who were close to David and his family. Through this event, we aspire to pay a fitting tribute to David’s memory and celebrate his lasting impact on our organization and the broader scientific community.

We are currently finalizing the program of this special meeting, which will take place at the Sidney Sussex College in Cambridge, UK, from September 9th to September 11th, 2024.

You can have a look at the draft programme here

 If you wish to attend the workshop, please get in touch with Mrs Paula Caprelli (p.caprelli@jazzitaly.com) as soon as possible in order for us to be able to register your presence and predispose the logistics.

For general enquiries or any additional required information, please get in touch with Dr. Cinzia Maria Bellettato (c.bellettato@gmail.com)

We look forward to seeing you in September as we come together to honour the memory of Dr. David Begley and revive the important work of the Brains for Brain Foundation.

The great unforgettable Prof. David Begley PhD passed away last July 6, 2023. Though his physical presence is no longer with us, his unwavering spirit and enthusiasm continue to inspire and drive our organization forward.

As planned with Prof. Begley just before his passing, the Brains for Brain Foundation remains steadfastly committed to fostering research among young scientists. The foundation is particularly focused on encouraging these researchers to unravel the pathophysiology of Lysosomal Diseases’ neuronopathic phenotypes and search for therapies that can cross the blood-brain barrier – a cause that was dear to David’s heart.

In honour of Prof. Begley’s remarkable legacy and contributions, the Brains for Brain Foundation has established the prestigious David Begley Award. It is with great pleasure that we announce the inaugural recipient of this award, Ms. Chloé Dias, an outstanding PhD student in Prof. Jerome Ausseil’s lab at the University of Toulouse, France.

Ms. Dias was recognized for her groundbreaking work on “Microglia-derived extracellular vesicles promote neuropathology in Sanfilippo Syndrome,” which was presented at the 17th Symposium on Mucopolysaccharidosis and Related Diseases, which took place from April 4-7, 2024  in Würzburg, Germany, and that was aimed at discussing the latest information about MPS and related lysosomal storage.

The Brains for Brain Foundation extends its heartfelt congratulations to Ms. Chloé Dias, a promising young researcher who exemplifies the spirit of innovation and dedication that defined Prof. David Begley’s legacy. We are confident that her work will continue to inspire and propel the field of Mucopolysaccharidosis research forward, honouring the memory of our dear friend and colleague.

As we move forward without Prof. Begley’s physical presence, we are resolved to carry on his vision and ensure that the Brains for Brain Foundation remains a beacon of hope and a driving force in the pursuit of treatments and cures for Lysosomal Diseases. Through initiatives like the David Begley Award, we will continue to nurture the next generation of researchers and innovators, empowering them to follow in David’s footsteps and make a lasting impact on the world.

The Brains for Brain Foundation is organising its annual workshop that will be held at Sidney Sussex College in Cambridge, UK, on 9-11 September 2024.

The program will feature both scientific and strategic sessions, covering various aspects of CNS involvement in Lysosomal Storage Disorders, updates on the progress of the B4B Core Projects, and discussions on attracting EU and private funds to support the Foundation’s research initiatives.

The workshop will also represent an opportunity to pay tribute to the memory of Dr. David Begley, the vice president and co-founder of the Brains for Brain Foundation.

If you wish to attend the workshop, please get in touch with Mrs Paula Caprelli (p.caprelli@jazzitaly.com) as soon as possible in order for us to be able to register your presence and predispose the logistics.

For general enquiries or any additional required information, please get in touch with Dr. Cinzia Maria Bellettato (c.bellettato@gmail.com)

We are pleased to announce the forthcoming 14th meeting of the Brains for Brain Foundation (B4B).

B4B is an International Task Force (chaired by Prof Maurizio Scarpa) composed of outstanding scientists and ‘clinicians’ who are leaders in the neurological field. Together with Biotech companies they aim to facilitate joint efforts to improve the understanding of rare genetic diseases affecting and seriously damaging the brain, in particular in children. The main mission of the fundation infact consists in the funding of translational research and education in the field of neurodegenerative paediatric disorders  mainly focusing  the attention on a group of about 40 genetically and biochemically very well characterised diseases, called Lysosomal Storage Disorders (LSDs).

According to its traditional programme, the workshop will be held in Frankfurt, Germany, since this venue is really well connected with all the countries and facilitates the participations of people from different parts of the world.

The meeting will therefore take place at the Hotel Mercure Frankfurt Airport.

Please note that this year, to avoid overlapping with other important meetings, this year we will have it in March.

The meeting will  in fact begin on March 6th at 2pm and end on the 8th with lunch. 

 If you wish to attend the workshop, please get in touch with Mrs Paula Caprelli (p.caprelli@jazzitaly.com) as soon as possible in order for us to be able to register your presence and predispose the logistics.

For general enquiries or any additional required information, please get in touch with Dr. Cinzia Maria Bellettato (c.bellettato@gmail.com)