Tag: Alana

The UN Economic and Social Council is the main forum for the discussion of international socio-economic issues within the United Nations. As a Consultant, Alana will seek to expand and bring forward demands and particularities to guarantee the rights of children in Brazil and in the global south

In December 2022 Alana obtained the status of Special Consultant at the Economic and Social Council (ECOSOC) of the United Nations (UN). For a civil society organization, this status allows it to engage with the UN in a variety of ways, one of which is by participating in the Human Rights Council and, under specific conditions, in some meetings of the General Assembly.

By becoming a Special Consultant, Alana starts to strengthen ties with the main organization coordinating the economic and social activities of 14 UN agencies, including UNICEF (United Nations International Children’s Emergency Fund) UNDP (United Nations Development Programme). “When civil society organizations obtain consultative status with ECOSOC, they have the right to actively participate in the work of the Council”, explains Ana Claudia Cifali, Alana’s legal coordinator.

The granting of consultative status marks the recognition of a work of political advocacy and technical contribution to the UN that Alana has been building and expanding over the years, especially in bringing demands and particularities to the international debate which guarantee the rights of Brazilian children and of the global south.

As a Special Consultant, Alana can now also send representatives to UN headquarters in New York, in the United States, and Geneva, in Switzerland, and present written and oral statements at meetings and conferences, among other actions that strengthen the relationship with the UN itself.

At the same time, Alana becomes part of a list of other Brazilian entities already recognized internationally for their contributions, such as Conectas Human Rights, the Indigenous Missionary Council (CIMI), Geledés – Black Women’s Institute, Instituto Igarapé, the Sou da Paz Institute, the Federal Council of the Brazilian Bar Association (OAB) and the Engajamundo Youth Association.

“In other words, we can now play an even more effective role in the international community, with the possibility of helping to apply and monitor international agreements, contributing technically, working as an alert agent and carrying out specialized analyzes in the defense of the rights of children. and adolescents, including issues related to the environment and the health of the most vulnerable populations”, concludes Cifali.

The Alana Institute joins, in early June, the Committee on the Rights of Children, Child Rights Connect, an international network of children’s rights, focusing on advocacy in the United Nations (UN).

Formed by more than 85 international organizations from countries such as the United States, Canada, Germany, Uruguay and Peru, the network’s objective is to ensure that children around the world can fully enjoy their rights, as set out in the Convention on the Rights of Children.

“Being part of this network is a recognition of our position as a global organization that looks at the well-being and rights of children and allows us to be even closer to major international discussions and bring children from the global south, especially from Brazil, with more strength to the UN system”, says Pedro Hartung, Director of Policies and Children’s Rights at Alana Institute.

• See also: Alana Foundation is accepted into Elevate Children Funders Group, a global network of funders focused on children’s rights

The Alana Foundation and the Brazilian Federation of Down Syndrome Associations (FBASD) held a webinar on April 29 to present research on the use of memantine, a drug recommended for the treatment of individuals with Alzheimer’s, as a potential treatment to improve cognition of people with Down syndrome or trisomy 21 (T21).

Funded by the Alana Foundation, with support from the Awakening Angels Foundation (USA), and in partnership with institutions in the United States and Brazil, the study was published in January 2022 in The Lancet Neurology, the world’s number one medical journal in the area of neurology. The results indicate that the use of memantine may be a future treatment option for people with Down syndrome.

The meeting “Study of memantine in trisomy 21: results and future implications” brought together researchers Alberto Costa, physician, neuroscientist and director of clinical research at the International Association for Research in T21 – Trisomy 21 Research Society (T21RS), and Ana Claudia Brandão, pediatrician at the Center for Pediatric Specialties at Hospital Israelita Albert Einstein, who led the research in the United States and Brazil. The conversation was mediated by Alex Duarte, a specialist in Clinical and Institutional Psychopedagogy, and Fernanda Machado, a graphic designer with Down syndrome who participated in Expedition 21 – First Empowerment Immersion for people with intellectual disabilities.

The researchers presented, in a simple and accessible way, the objectives and developments of this research as a result of an effort to promote the health of people with Down syndrome. Watch (in Portuguese):

Despite not having demonstrated the expected effectiveness on the cognitive performance of people with Down syndrome, the research raised the possibility that they may metabolize drugs, such as memantine, in an unusual way. The study also raises the hypothesis that treatments with higher dosages may benefit these people. This discovery opens the door to new debates about treatments capable of improving the cognitive deficits associated with T21.

People with Down syndrome develop the earliest form of Alzheimer’s disease, points out Alberto Costa: “This pathology is practically universal at the age of 40 for these people”. Ana Claudia Brandão comments that the study intends to create more tools so they can expand their memory, and consequently, their performance and their role in schools, in the job market and in society. “We aim to improve their quality of life, associated with health, work, well-being, a sense of belonging and security, and the quality of the environment.”

And why research on memantine? “There are already several pre-clinical studies using memantine that show encouraging and positive results and that made us plan clinical studies, which involve human beings. Memantine is also already used with proven safety and efficacy in Brazil, the United States and Europe in the treatment of Alzheimer’s. In our country, it is available in pharmacies and in the Unified Health System, the SUS, that is to say, it is an affordable medication for the population”, completes the researcher.

Further studies are still needed to assess whether treatments with higher doses can benefit people with Down syndrome, as this will make it possible to be certain that memantine will have an impact on the quality of life of these people.

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• See also: Alana Institute is accepted as a member of Child Rights Connect