THE STATUTES OF THE FOUNDATION

“Brains for Brain Foundation – Onlus”

ARTICLE 1 – SOCIAL NAME
A foundation called “Brains for Brain Foundation – Onlus” has been established.
The Foundation has the character of a non-profit organization of social utility in accordance with D. Lgs. No 4 December 1997 460.

ARTICLE 2 – Headquarters
The registered office of the Foundation is located in Padova, via N. Giustiniani 3, c/o Department of Paediatrics, University of Padova.
Foundation Operative offices necessary for the activity management and for the achievement of the institutional aims are identified by the Administrative Council (CDA) and might be held either in Italy or abroad.

ARTICLE 3 – Duration
The duration of this foundation is established until 31.12.2050. The Administrative Council may extend that period or establish its continuance for an unlimited period.

ARTICLE 4 – Purpose
The Foundation operates on a non-profit basis and fosters and promotes social utility mostly towards disadvantaged children such as carriers of potential rare neurodegenerative paediatric disorders.
The Foundation, according to its institutional purposes, operates its main activity in relation to the protection of the disadvantaged people in the following areas:

Scientific research;
Training .
Social assistance and social care;
Health care;

In this context, under the agreement-consensus of the medical-scientific committee, the Foundation, promotes the medical scientific research on rare paediatric neurodegenerative diseases with special interest to lysosomal storage diseases and all other diseases with genetic origin, developed by Research Institutes, Associations, Organization or Public corporations that follow the Foundation’s purpose. Moreover the Foundation promotes public opinion and social awareness on issues arising from these hereditary diseases encouraging the scientific divulgation of knowledge and the social educational activity.
In particular, the Foundation will be directly responsible of the research activity management in relation to the above indicated areas of research aspects, even directly organizing laboratories and promoting the realization of Centres of Research, managing funds allocated for research projects, providing input for new medical-scientific research studies start up, and many other similar related activities.

ARTICLE 5 – instrumental linked activities.
The Foundation, in order to achieve its aims, as expressed by art. 4, might implement any kind of useful and opportune activities such as:
– Taking care of national and international research programs;
– Coordinating clinical pharmaceutical trials in accordance with “Good Clinical Practice” rules, DM No. 162, July 15 1997 and the Circular of the Ministry of Health No. 15 of 5 October 2000;
– Studying and enhancing social-welfare assistance toward disabled people, by the mean of research projects, conferences, seminars, learning activities;
– Encouraging convergent relationship between medical and social care needs, involving academic and other cultural institutions, and other public or private Italian and foreignbodies
– Promoting research, seminars and meetings in order to facilitate the intellectual exchange about ethical and social welfare issues and generally about any other matter concerning the field of paediatric neurodegenerative diseases and other related hereditary diseases;
– Making the Foundation cultural heritage available for the benefit of practitioners, scholars, clinical scientific researchers, health or social care professionals;
– Promoting initiatives aimed at upgrading and training the knowledge and the skills of those professional involved in helping children with neurodegenerative diseases or other related illness and developing research and studies even on behalf of other organizations and institutions either in Italy or abroad;
– Stipulating any appropriate agreement or contract, even for financing the upon deliberated tasks, including, without the exclusion of others: the borrowing and lending in the short and long term, the acquisition of properties, purchasing ownership or surface right, the conclusion of agreements of any kind, included those registered in public records, with public or private bodies, that are considered necessary or appropriate to achieve the objectives of the Foundation;
– Administering and managing the owned or held
assets, assets held as proprietary, lessor, or that the Foundation has on loan for use.
Concluding agreements for delegating another subject to take care of some activities, determining duration, subject, and mode of execution;
– Participating in associations, institutions and organizations, either public or private, whose business concerns, whether directly or indirectly, the pursuit of objectives similar to those of the Foundation itself, co-participating, when necessary, to the establishment of above mentioned institutions;
– Constituting, basing on fund management as referred in art. 6, capital companies that held, on an instrumental and exclusive mode, direct or indirect activities in the pursuit of statutory purposes; – Establishing awards and scholarships;
– Persuiting, on an incidental and instrumental way, the institutional goals by the mean of marketing activities, including publishing and audiovisual industries in general;
– Taking over the management and the organization of other dealings having purposes similar or complementary to those of the Foundation; (or The enhancement, fulfilment and support of all activities destined to ensure the achievement of the set purpose).
– Occasionally promoting awareness campaigns and public collections of funds;
– Performing any other activity that is suitable to support the pursuit of institutional goals.

ARTICLE 6 – Heritage
The patrimony of the Foundation is constituted by:
– The sums conferred from the liberal donations deposited by the ” Pro Roberto Committee ” that represents the founding institution;
– The movable and immovable assets assigned to the Foundation at any title;

– From donations, bequests, endowments or contributions made by public and private bodies or individual and single entity provided that the movable and immovable assets, the endowments and contributions mentioned above are intended to increase the assets and to achieve the aims that have been initially set by founders;
– Of any amounts withheld from the income that the Administrative Council destinies to the increase of the patrimony.

ARTICLE 7 – Revenue-Income
In order to perform its tasks, the following entries are available to the Foundation:
– Income derived from assets;

– Contributions and funding for research made by Italian and/or foreign public and private bodies;
– Money resulted from public subscription;
– Grants and donations made by third parties for the implementation of the statutory purposes and not intended for direct capital increasing;
– Sums received by the Foundation as a result of activities undertaken in compliance with law, whose net revenues will be destined to social purposes;
– Amounts arising from disposals of property forming part of the assets which are intended, by reasoned decision of the Administrative Council, for other use than the patrimony increase.
For its own activities management, the Foundation handles, together with the money derived from the management of surpluses, any profits and the proceeds of its assets, any other asset that, in any way, becomes part of its patrimony, with explicit prohibition, during Foundation life, of distributing, even in an indirect way, profits and management surpluses as well as funds, reserves or capital.

ARTICLE 8 – Bodies
– The various Bodies of the Foundation are:
– The President;
– The Vice President;
– The Administrative Council;
– The General Secretary;
– The medical scientific Committee;
– The Auditor.

ARTICLE 9 – President
The President is the legal representative of the Foundation and is elected by the Administrative Council of the Foundation.
The President convokes and chairs the Administrative council, oversees the implementation of the resolutions of the Council itself, and maintains relations with the authorities and public administrations.
The President is appointed for a three years mandate and may be re-elected.

ARTICLE 10 – Vice President
The Vice President is elected by the Administrative Council.
In case of absence or temporary unavailability all the functions-of the President shall be conducted by the Vice President.

ARTICLE 11 – Administrative Council
The Foundation is governed by an Administrative Council, composed of three to eight members who has a three years mandate.
The members of the first Administrative Council are appointed by the founder members during the constitutive meeting of the Foundation.
The below indicated Gentlemen are permanent members of the Administrative Council:
– Maurizio SCARPA
– David John BEGLEY
while the remaining members are appointed by the Administrative Council.
In all cases, when during the mandate one or more counsellors are missing, they will be replaced or substitute upon appointment of the Administrative Council. The meeting of the Scientific Council is statutory if at least half of its members are present or represented. The decisions of the Scientific Council are taken by a simple majority of the members present of represented except when a qualified majority is not required.
The Administrative Council may organize committees or study workshops groups for the assisted learning of specific organizational and managerial issues.
Administrative Council is entrusted and responsible for the Foundation managerial policy and for the appointment of the President, the General-Secretary and the Medical Scientific Committee. The Administrative Council meets at least twice a year, for assessing and approving respectively: the expected budget of income and expenditure of the coming year, and the annual financial and economic statement. Moreover, the convocation of Administrative Council extraordinary meeting is done upon direct initiative of the President or upon proposal of one third of the members.
The announcement with invitation to participate to the assembly meetings is made by post, fax or email.
The assembly of the Administrative Council will also take place through exchange of electronic mails or teleconferencing. Minutes of the Administrative Council meeting must be noted in chronological order in special register.
The Administrative Council appoints the General Secretary. The General Secretary holds office for three years together with the Administrative Council which has been established contextually his appointment, and may be re-elected.
The General Secretary:
– Is responsible for drawing up accounting records; – Makes and collects payments;
– Draws up the minutes of Administrative Council meetings;
– Supports and assists the President in carrying out his functions.

ARTICLE 13 – Medical Scientific CommitteeThe Medical Scientific Committee of the Foundation, appointed by the Administrative Council is composed of eminent Italian or foreign experts and clinical researchers working in the field of paediatric neurodegenerative diseases and related diseases. The committee‘s mission is to identify, report and promote the Administrative Council participation to the most effective and innovative funding enterprises related to Foundation institutional purposes and actions.The Medical Scientific Committee holds the scientific operative coordination of the Foundation projects.
The Foundation, according to the activities disciplined by the Administrative Council in its guidelines, will allocate funds according to the opinions, assessment and criteria expressed by the Committee, such acts of ordinary administration: if deemed necessary, it may proceed to purchase the equipment required for the research itself, which may also involve the installation, construction, updating and anything else necessary to promote and implement the research itself.

ARTICLE 14 – AuditorThe Administrative Council nominates, upon proposal of the President, an Auditor.
The Auditor holds office for three years and may be re-elected. He has the following responsibilities:- To Check the Foundation administration and financial management;
To Draws up a report to the Administrative Council about financial budget and survey statements approved by the Administered Council.
Alternatively to the appointment of the Auditor, the Administrative Council may entrust -designate- an external auditing company to take care of the annual review of the final and presumptive budge accounts.

ARTICLE 15 – Remunerations
All offices and tasks mentioned in the Statute are to be considered gratuitous- with the exception of “Secretary General” task, for which, however, annual individual emoluments-import can be paid only if not superior to those indicated by art. 10 of D. Lgs. No 4 December 1997 460 (6 lett. C and e).

ARTICLE 16 – Cash and financial The fiscal year runs from January 1 to December 31 each year.
The economic and financial accounts of the Foundation: – Must inform about the economic and financial situation of the same;
– Must separately claim and make a report about the institutional and directly related or ancillary activities.
The economic and financial report must be submitted to the Administrative Council Board and must be reviewed by the Board of Auditors for its approval within four months after the conclusion of the social business, with possible extension up to six months in case of exceptional events.
The financial statement, duly approved, shall be duly noted in a special register and must be posted inside the Foundation premises for at least eight days.
It’s strictly forbidden to the Foundation to distribute, also by indirect way, profits management surplus however denominated, as well as funds, reserves or capital during the life of the association itself, unless the destination or the distribution are imposed by law or are effected for other non profitable organizations of social utility (Onlus) that belong to the same and unitary structure for law, statute or rule.

ARTICLE 17 – Dissolution of the Foundation
The dissolution of the Foundation must be approved by the Administrative Council with the favourable vote of at least 2 / 3 of the members, according to the provisions of law.
In case of dissolution, the Administrative Council shall appoint one or more liquidators, including non-members, and determine any possible compensation.
In case of dissolution of the Foundation, for any reason, all properties that should remain after the settlements, following the indications of the Administrative Council and upon execution of liquidator, will be donated to other non profit and social utility entities except for a different destination provided by law and after opinion of the control body as specified in the art. 3 – Paragraph 190 of Law No 23 December 1996 662.

ARTICLE 18 – Final provisions
For all matters and any questions not expressly envisaged by this Statute please refer to the applicable legislation.