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Alana Institute is accepted as a member of Child Rights Connect

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.

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Memantine as a potential treatment for Down syndrome

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.

Access the full survey here.

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TiNis Project encourages children and adolescents to create green spaces to play, learn, and connect with nature

The project promotes plant cultivation in urban or rural spaces and brings children closer to nature, so they can become agents of transformation for a sustainable world.

At a time when it is still necessary to raise awareness among adults about the importance of respecting nature, Alana Institute and Gisele Bündchen launched, on February 27, the TiNis – Children’s Land project, which seeks to strengthen and stimulate the child’s contact and emotional bond with nature by creating a green space to play, learn, and experience. Through the cultivation of plants in small spaces, called TiNis — which require at least three plant pots or half a square meter of garden bed — the project invites children, through new habits and practices, to develop empathy for all forms of life, becoming agents of transformation for a sustainable world.

This contact with nature is designed for all children: from the countryside to the city, inside and outside their homes, in schools and communities, accompanied by family and caregivers. In their TiNis, children plant in various ways, including from different seeds, and learn more about species, germination, the plant cycle, and care. In addition, children can enjoy social activities, such as spending more time with grandparents and exchanging information about plants, learning more about fauna, creating shelters for insects, or using their creativity through games with seeds and plants and the decoration of their TiNis.

To expand this initiative, Gisele Bündchen, in partnership with the production company Maria Farinha Filmes, is preparing an Instagram series with eleven episodes, in which, along with her children and other families, they will record their inspiring journeys in creating TiNis at home. In addition, the book TiNis – Children’s Land will also be launched, also in an “audiobook” format, available for free on the project’s website — including for download — telling the story of a secret that is also an invitation to the adventure of imagining, feeling, and creating a TiNi. “Everyone deserves to dream, to feel the experience, and to listen to stories. We can only manifest what we can imagine. With the power of imagination, we create and recreate stories and, in this way, we help build our reality,” writes Gisele Bündchen in the book’s preface.

Alana Institute, in partnership with the Child and Nature Program, has also developed the Guide for Young TiNi Creators, a material where children will have the opportunity to practice observation, learn, and record the transformation and events of their TiNis. The guide provides tips on how to create and cultivate plants, as well as activities that stimulate children’s play. The program also recently prepared, in partnership with the Brazilian Society of Pediatrics, a guidance manual addressing the benefits of nature in child and adolescent development, as this contact improves all the most important milestones of a healthy childhood — immunity, memory, sleep, learning capacity, sociability, and physical ability.

TiNis is a project created by Asociación ANIA, which originated in Peru and is already present in countries such as Ecuador, Bolivia, Costa Rica, Indonesia, and Japan. The initiative was inspired by Peruvian Joaquín Leguía, who, after spending his childhood in his grandmother’s garden always accompanied by his brother, understood that this experience could transform young people and the world. “As I grew older, I realized the degradation and destruction that occurs today on our planet, and that technology and money are not enough to solve these issues. Why? Because all our actions are linked to our values, which are formed in us during childhood, until around 12 years old,” says Leguía.

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Science and knowledge in the search for a diverse world

“It is essential that research is carried out and technologies are developed to ensure that people with disabilities acquire practical and social skills to facilitate their participation in education systems, work and community life”. 

Excerpt from joint statement by Alana and MIT, March 20, 2019

The Alana Foundation, Alana’s philanthropic branch created in 2012 and headquartered in the United States, will donate US$ 28.6 million to MIT (Massachusetts Institute of Technology), to encourage the development of new technological and multidisciplinary research. Part of this initiative is the creation of the Alana Down Syndrome Center; a technology program for the development of research that can improve the lives of people with disabilities; and scholarships.

The donation, formalized on March 20, will give rise to the Alana Down Syndrome Center, hosted by the Picower Institute for Learning and Memory at MIT, which will involve the expertise of scientists and engineers in an initiative to deepen the biological and neuroscientific knowledge of Down syndrome. Down. The center, which will be led by scientists Angelika Amon – an expert in understanding chromosomal instability – and Li-Huei Tsai – recognized for her work with degenerative diseases, including Alzheimer’s disease – will also offer new opportunities for young scientists and students from around the world through scholarships.

The technology program will be in partnership with the Deshpande Center for Technological Innovation (“Technology to Foster Skills”) at MIT, in which the researcher seeks support and encouragement to design and develop technologies that can increase the quality of life and autonomy of disabled people. Together, the center and the program will help accelerate the creation, development and testing of new technologies that aim to enhance the quality of life of people with disabilities and increase their participation and inclusion in education, work and the community.

Watch the joint statement from Alana and MIT:

 

The donation made by the Alana Foundation supports the MIT Campaign for a Better World, publicly launched in 2016 with the mission to advance MIT’s work in education, research and innovation to address humanity’s most pressing challenges.

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McKinsey paper: Down syndrome and businesses

The value employees with Down syndrome can add to organizations

The McKinsey&Company consultancy, in partnership with the Alana Institute, launched an unprecedented paper on the positive impacts of people with Down syndrome on the job market. The study, carried out in Brazilian and foreign companies, demonstrates that employees with Down syndrome can improve the organizational health of companies in five out of nine dimensions.

Aspects such as leadership, team motivation, culture and climate, customer satisfaction and coordination and control can be positively impacted when there is an employee with Down syndrome on the team. The results obtained were very encouraging and offer a new perspective on the subject, contributing to the elimination of barriers related to the employability of people with disabilities.

Click on the image below to read the full survey (in Portuguese):

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