” Cat Eye Syndrome International” Onlus (Non-profit organization)
On 28 February 2014 in Rome, the following people:
– Sylvie Renault , born in Ischia (Naples) on 05/09/1976,resident in Rome;
– Desiree Renault , born in Ischia (Naples) on 07/08/1970, resident in Rome;
– Alexander Mocci , born in Civitavecchia (RM) on 27/10/1979, resident in Civitavecchia (RM);
– Mario Mocci, born in Teulada (CA) on 8 /12/ 1954, resident in Civitavecchia (RM);
stipulated the following written agreement:
1) The constitution of, among those present, pursuant to Dpr 460/1997and the provisions as set out by the Civil Code relating to associations, a non-profit association called:
“Cat Eye Syndrome International” Onlus
which pursues the exclusive purpose of social, human, civil and cultural solidarity and research.
2 ) The Association has its main office in Rome, at the President’s residence currently in Via Casape n. 26.
The Association may decide to open or close secondary offices by resolution of the Board of Directors.
The main office may be transferred via a simple resolution by the assembly.
3) The duration of the Association is to 31 December 2050.
4) The Association is totally non-profit and aims to carry out socially useful activities for its members and third parties, fully respecting their freedom and dignity.
The association will adhere to the following principles: the absence of any profit-making, democracy within its structure, electivity and non-remuneration of the Board members.
The association’s aim is to give the necessary support to its members and their families in order to be informed and to properly deal with all the medical problems, legal and social issues related to the Schmid- Fraccaro Syndrome – Partial tetrasomy of chromosome 22 or Inv Dup (22) ( q11 ) Inverted duplication of chromosome 22q 11.2 and the related syndromes.
In order to achieve its goals, the association intends to operate as specified in art. 2 of the Social Statute.
5 ) The Association shall be governed by the Social Statute and any further regulations .
6) the Association bodies consist of:
a) the general meeting of members;
b) the Board of Directors;
c ) the President;
d ) the Scientific Committee;
e) the Statutory Board or Auditor.
The following members are appointed at the first Board of Directors meeting, as founders:
Sylvie Renault , Renault Desiree, Alexander Mocci, whose details already given above.
The following have been appointed to form part of the first Board of Directors:
– Sylvie Renault – President,
– Alexander Mocci , Vice President ;
– Desiree Renault, Director;
who agree to the above nominations as there are no legal impediments.
All the elected positions are not remunerated, only receipted expenses are reimbursable.
The first Board of Directors will expire on February 28, 2017 (Two-thousand-and-seventeen).
The Statutory Board and Auditor were not appointed.
7) The social services year ends on 31 December of each year. The first social services year will end on 31 (thirty-one ) December 2014 (two-thousand-and-fourteen).
8 ) Although not expressly provided in this memorandum, the attached statute reference is made to the DPR 460/1997 and the regulations as set out in the Civil Code and other applicable laws.
9) This Act and related costs shall be borne by the Association.
Article 1 – Name , Registered Office and Duration
For the purposes and effects of the DPR 460/97 regarding non-profit organizations, the International Association of Cat Eye Syndrome, is hereby constituted and named:
” Cat Eye Syndrome International” Onlus ( Non-Profit Organization of Social Utility)
The Association is made up of stakeholders interested in the syndrome of partial trisomy or tetrasomy of part of chromosome 22, also known as Schmid-Fraccaro Syndrome – Partial tetrasomy of chromosome 22 or Inv Dup (22) ( q11 ) Inverted duplication of chromosome 22q11 .2 and related syndromes .
The Association’s registered office is in Rome, however local and territorial autonomous offices may be opened, albeit subject to approval, throughout the entire country or even abroad.
The Association may use, for any reason, with a third party the abbreviated name or acronym:
” C.E.S.I. – Onlus ”
The Association’s duration is up to 31 December 2050.
Article 2 – Intent and social Purpose
The Association aims to create, on a non-profit basis, solutions for medical and social problems for people who are afflicted by the Schmid- Fraccaro Syndrome – Partial tetrasomy of chromosome 22 or Inv Dup (22) (q11) Inverted Duplication of the chromosome 22q 11.2 and related syndromes, and their families.
The activities of the Association are undertaken solely for social solidarity purposes in the fields of:
– social work or social welfare;
– health care;
– education and training;
– scientific research;
The Association’s purpose is to give, on a non- profit basis, the necessary support to its members and their families so that they may be informed and can consequently properly deal with all the medical, legal and social issues related to the Schmid- Fraccaro Syndrome – partial tetrasomy of chromosome 22 or Inv Dup (22) (q11) Inverted duplication of chromosome 22q 11.2 and the related syndromes.
The intention is to achieve and pursue the objectives set out above and carry them out through the following actions:
– Provide medical and legal advice to its members;
– Promote and circulate knowledge regarding Schmid- Fraccaro syndrome(Cat Eye Syndrome);
– Publish and circulate scientific, educational and legal information;
– Organize regular meetings with the patients, families and rehabilitators;
– Promote and coordinate specific scientific research projects;
– Coordinate, through its Scientific and Technical Committee, research on Schmid- Fraccaro syndrome (Cat Eye Syndrome) in national research institutes thus avoiding duplication of resources;
– To collect, coordinate, circulate and publish the results of national and international research;
– Translate foreign language publications into Italian and vice-versa;
– Promote the creation of a specific information channel for all schools and grades;
– Develop genetic and medical protocols for diagnosing and treating Schmid- Fraccaro syndrome(Cat Eye Syndrome);
– Organize regular scientific meetings to verify, compare and inform people of the results of the research carried out on Schmid- Fraccaro syndrome (Cat Eye Syndrome);
– To support , administer or set up other research facilities;
– To raise funds through donations from individuals or companies to be used for ongoing programs or to be allocated for future programs;
– Access national or international funding programs;
– Buy and rent property of any kind to be used according to relevant needs;
– Deposit or invest funds legally via any system through the support of a financial adviser;
– Take out insurance policies to cover any foreseeable risk to Cat Eye Syndrome Association International properties;
– Promote and maintain contacts with similar Associations, operating in foreign countries;
– Cooperate with other entities with similar social objectives;
– Take forth any initiative granted by the law in the pursuit of the Association’s objective.
Article 3 – Trademark (Logo)
The Association may register its own trademark at the Patent and Trademark Office (C.C.I.A.A.) in Rome. The attached registration certificate, with relevant picture and description, will be kept at the Association’s registered office.
Article 4 – Members
Members can be either individuals or legal persons who are interested in the Association and its humanitarian, social and health services.
Members are divided into the following categories:
patients, parents, brothers and sisters and guardians of people with Schmid- Fraccaro syndrome (Cat Eye Syndrome) and related syndromes, or whoever else has the custody, guardianship, tutelage and participates in the active life of the Association and contributes to its activities through the annual payment of the membership fee and contributions.
any individuals or legal persons who wish to contribute to the achievement of the purposes of the Association, through the payment of the annual membership fee or other form of voluntary contributions.
any individuals or legal persons who are appointed for specific merits regarding activities, research or support for the purposes of the Association.
Members’ admission is approved by the Board of Directors, at the request of the parties and after the verification of the requirements referred to in paragraph 1, in its sole discretion.
Temporary participation within the association is excluded.
Membership is not transferable.
The Member may recede or be excluded pursuant to Art. 24 of the Civil Code;
Membership is withdrawn if the annual fee is not paid within ninety days of the start of the annuity.
Article 5 – Friends of the Cat Eye Syndrome International.
The “Friends of the Cat Eye Syndrome International” are those who, whether they be individuals or legal persons, do not wish to participate in the active life of the Association and therefore do not ask to become members, but wish to contribute to the achievement of the purposes of the Association, through a donation as a voluntary contribution in support of its livelihood.
These ” Friends of the Cat Eye Syndrome International”, “Friends of CESI “, if invited, may attend the Members’ meetings however without the right to vote.
Article 6 – Association heritage and resources
The assets of the Association shall consist of:
– Movable and immovable property that has become the property of the association;
– Any reserve funds as a result of a budget surplus;
– Any grants, donations, bequests and subsidies.
The Association’s resources/revenue shall consist of:
– annual payments by members (membership fees and contributions) in their respective amounts as
established by the General Assembly;
– Any surplus deriving from the association’s activities;
– Contributions to conferences and research;
– Funding from the State and public and private entities;
It is forbidden to carry out activities other than those referred to in article 2 if not directly related to the same.
Article 7 – Association Bodies
The bodies are:
– The Assembly members;
– The Board of Directors;
– The President;
– The Scientific Committee;
– The statutory auditors.
All the Association positions pertaining to this Statute are voluntary and shall not be remunerated.
Article 8 – The Members Assembly
The members assembly is composed of all the members of the association; adults and in good standing with their annual membership fee payments.
The Assembly will appoint the Board of Directors, the President, the Scientific Committee and the Board of Statutory Auditors.
Article 9 – Assembly convening and resolutions
The Assembly is convened by the President, or his/her deputy, with a notice containing the agenda, the date, time and place – which may also be different from that of the Association’s office. The notice will be sent to the members at least eight days before the date set for the meeting. The notice shall also contain the date for the second meeting, to be held no later than the next day in the same manner.
Where statutory changes are foreseen in the agenda, the notice must also contain a copy of the draft of the proposed changes. The Assembly shall be convened at least once a year in ordinary session to report the program of activities carried out and to approve the budget, which must be prepared by the Board of Directors no later than 30 April of the year following the Deliberation in ordinary session regarding the determination and modification of the amount of the annual membership fee, on the proposed regulations by the Board of Directors, the appointment of the bodies of the Association at the end of the mandate and any other issue put forth by the President and in extraordinary sessions whenever the Board of Directors deems it necessary or at the request of one-fourth of the members.
The Members Assembly is chaired by the President or the Managing Director, if appointed, or his/her substitute; or in the absence of any of the above, the person appointed by the majority of the members present and eligible to vote. The President shall appoint the secretary.
The Assembly President may appoint two scrutineers when the Assembly decides to vote through secret ballot on the appointment of Directors, or other matters within its jurisdiction. In the first call, the General Assembly, both ordinary and extraordinary, and duly constituted when the majority of the members are present or represented, shall be effective by a majority vote of those present; the second call is valid regardless of the number of members present and represented and deliberates by a majority vote of those present . The members of the Board of Directors cannot vote deliberations regarding approval for financial statements and their responsibilities. The Assembly shall vote by show of hands, unless it resolves to vote by roll call or by secret ballot.
Article 10 – Board of Directors
The Board of Directors is elected among the ordinary members of the association and is made up of a number of not less than three and not more than eleven members elected by the General Assembly and shall hold office for three years and can be re-elected; the President is a member of the board by right.
During the initial meeting, the Vice President will be appointed; he/she will replace the President, with relevant responsibilities, in case of absence.
The Board of Directors shall be convened at least eight days before the meeting or, in the case of an emergency, by telegram or e-mail, at least forty-eight hours before the meeting by the President who is also chairman of the meeting. The Board of Directors may appoint one or more Managing Directors . It establishes and implements programs of activities, internal regulations, sets the General Assembly agenda, and institutes the regional offices. If one or more components are missing, the others shall be replaced via a council deliberation; those so appointed shall hold office until the first General Meeting of the members who will deliberate in this regard. The entire Board ceases to hold office when the majority of its members are missing. In this case, the remaining members of the Board shall hold office only until the General Assembly meeting reconstitutes it. The Council shall act based on a majority of votes of its components.
Article 11 – President
The President expresses and manifests the unity of the Association in its various expressions and activities;
The President is the legal representative of the Association before third parties and in court; has signing authority for executing the resolutions of the Board of Directors and chairs the Assembly and the Board of Directors meetings.
Article 12 – Statutory Auditors
The assembly, if required by law or if it deems appropriate, may elect a Board of Statutory Auditors which consists of three members and two deputies or an Auditor. The statutory auditors or the auditor shall be appointed by the assembly for a three-year period. The statutory auditors or the auditor, have the task of verifying and checking the work of the board of directors of the association and to verify compliance with the statutory purposes and local regulations. The audits and checks are recorded in an appropriate register. The auditors may put forth suggestions and recommendations to the president and board of directors which they deem useful in order to ensure the best performance of their duties in compliance with the Statute’s rules and regulations.
Article 13 – Financial Statements and Administration
The financial year coincides with the calendar year and therefore closes December 31 of each year.
Each budget is drawn up by the Board of Directors and is accompanied by a report which sets out its contents, programs and activities, both ongoing and implemented.
It is forbidden to distribute, even indirectly, surpluses, funds, reserves or capital during the life of the Association, unless it is required by law.
Any surplus funds must be used for implementing institutional activities and/or any activities directly linked to them.
Article 14 – Local Offices (regional or provincial) and foreign offices (international).
Possible locations abroad or in the country, as established by the Board of Directors’ deliberation and ratified by the General Assembly, operate on the territory they belong to in pursuit of the goals and purposes referred to in Article 2. In particular, they can promote and implement research programs, medical and rehabilitative care, and social assistance aimed at people suffering from the Schmid – Fraccaro syndrome (Cat Eye Syndrome) who reside abroad or in other regions/provinces, through self-financing or funds directly acquired by the Local Authorities. The offices or premises abroad will also organize cultural and/or recreational events aimed at raising funds for specific programs approved by the Board of Directors. For the purposes of their technical-economic feasibility, research programs and medical rehabilitation are subject to the approval by the CTS, whereas social welfare programs and fundraising must be approved in advance by the Board. A report of all the programs carried out by the Foreign, Regional or Provincial offices must be submitted to the Board of Directors. The report must be comprehensive and include a description of the results achieved.
In order to carry out the above activities the foreign, regional and provincial offices will be autonomous in managing their relations with the Public Administration and bodies of reference, and can constitute themselves as associations.
The Board of Directors will administer these offices and their activities by means of special regulations.
Article 15 – Dissolution
The Association may be dissolved and considered null by the General Assembly of members; it must be dissolved when the goal is not pursued in harmony with the statutory and operational purposes. The decision to dissolve the association and transfer its assets must be taken by at least two-thirds of the association’s members.
The General Meeting of the members that will carry out the dissolution of the Association, must:
a) appoint one or more liquidators;
b ) determining how the assets will be liquidated;
c) determine how the Association’s capital will be devolved to others (or other bodies) and other non-profit organizations that pursue the same purposes, and for purposes of public utility.
Article 16 – Postponement
For matters not covered and regulated in the present statute, the rules and regulations of the Civil Code and other applicable laws relating to Associations and non-profit Organization (DPR 460/97) will be applied.