What is “One day Sofia…”

Juridical status

On October 28th, 2014, the association named “One day Sofia… Ricerca senza confini per la cura della Sindrome di Rett (Onlus)” was established in Milan (Italy) with a public notary act, as a non-lucrative organization with social utility aims (Onlus), according to the Italian law. On December 1st, 2014 “One day Sofia…” was granted the status of non-lucrative organization (Onlus) by the National Registrar under the Italian Tax Authorities.

The establishment of a legal entity was the natural outcome of the efforts made in the previous months and the obvious escalation of the commitment of an entire community, in Italy and in the UAE, who came so close to our cause. “One day Sofia…”, being a legally recognized no-profit entity in Italy, is entitled to open branches in foreign countries. Our next goal is indeed, obtaining a charity license in the United Arab Emirates, where our family spends most of the year, even if Sofia is often in Italy for therapies or clinical trials.

“One day Sofia…” is a no-profit association that pursues exclusively objectives of social solidarity in the field of sanitary and socio-sanitary assistance in favor of patients affected by Rett Syndrome. The association is open for membership to everyone, without distinctions or discriminations. “One day Sofia…” is apolitical and has no territorial limitations to its mission:

Who we are

“One day Sofia…” was founded by Sofia’s parents, Benedetta Pasero and Lorenzo Candelpergher. In the same incorporation deed a Board of Directors has been appointed to manage the association’s activties for the first 5 years. The high professional and private profiles of the appointed directors is meant to be the first guarantee of rigorous, transparent and effective management of the association, fully committed to the cause.

How we are going to manage the funds raised

“One day Sofia…” targets efficiency, correctness and transparency in managing the funds raised as a fundamental aspect of its action. Funds raised by the association shall be devoted exclusively to fund research projects which are scientifically promising and deemed deserving by the Tecnical-Scientific Committee of “One day Sofia…”.

When the achievements of our fundraising campaigns, possibly toghether with the contributions of other no-profit subjects that may be involved to finance the selected projects, will allow to reach the budget required for the startup of the initial phase of the projects, “One day Sofia…” will grant the pledged funds in favor of the beneficiaries with prescribed uses, adopting rigorous measures to control and report about the utilization of the funds made available thanks to the generousity of our supporters.

When specific fundraising campaigns will be launched, i.e. campaigns to fund research projects specifically identified, a specific informative note will be prepared, which will provide all the relevant information: project denomination, required budget, timeframework and phasing, partnerships and co-funding, progress and expenditures eporting procedures, actions planned in case the target budget for fundraising will not be reached.

Out of the total funds raised through specific project-related fundraising campaigns and, more in genera,l through all other fundraising initiatives, “One day Sofia…” targets to devote not less than 95% to directly fund scientific research projects.

In the event that a fundraising campaign for specifically identified project dos not reach the targed budget or in the event that the outcomes of the initial phases of the projects should be negative and such to suggest not to proceed in the subsequent phases of the research, the funds raised and not utilized, as well as those that may be raised in excess of the target budget for the project, as per resolution of the Board of Directors, shall be devoted to the other activities promoted by the association as per its bylaws and in particular will be preferably devoted in favor of other research projects supported by the association or deemed deserving by the Technical-Scientific Committee or, in the absence of such indications, in favor of other no-profit organizations, national or international, committed to support the research to cure Rett Syndrome.

“One day Sofia…” intends to adopt specific internal regulations aiming at managing potential conflicts of interest that may involve its directors, collaborators, employees, volounteers both in the procurement of goods and services needed for the fundraising and in the management of the utilization of the raised funds. Such regulations shall become an intergral part of the Ethical Code of the association, which is as well being adopted soon by the association.

“One day Sofia…” intends to provide periodical and punctual updates regarding the progress of the specific activities related to the funded projects or those for which a fundraising campaign has been launched, as well as regarding its activities more in general, within an overal framework of respect of the principles of transparency, reporting and accessibility of information about its operations according to the “Guidelines for fundraising” prepared by the Italian National Agency for Non-Lucrative Organizations with Social Aims.

The responsibility to supervise the fundraising activities isattributed, as per the Articles of Association, to the Board of Directors. The reporting of the fundraising activities shall be supervised by the Auditors of the Association.