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Protocolado Projeto de Lei para Instituir o Dia Estadual de Conscientização da Síndrome de Angelman no Âmbito do Estado de São Paulo
03 de outubro de 2024Protocolado Projeto de Lei para Instituir o Dia Estadual de Conscientização da Síndrome de Angelman no Âmbito do Estado de São Paulo
Blog Post escrito por Fernanda - Angelman advocate e mãe de uma menina que vive com esta síndrome
Fotografia da Deputada Estadual Andréa Werner recebendo os ofícios pelas mãos das mães e Angelman advocates Priscila e Margareth.
Temos muito o que fazer para ampliar a conscientização sobre a Síndrome de Angelman na sociedade brasileira. O advocacy é um processo fundamental para sensibilizar parlamentares e gestores públicos sobre as necessidades dos indivíduos com Síndrome de Angelman e suas famílias, dando maior eficácia e efetividade às políticas públicas.
Graças ao empenho e dedicação das incríveis mães Priscila e Margareth, alcançamos um marco significativo: no dia 26 de setembro, entregamos dois ofícios à Deputada Andréa Werner, do estado de São Paulo.
Hoje, temos a alegria de compartilhar que o gabinete da deputada já protocolou na ALESP o Projeto de Lei que solicitamos, cujo objetivo é tornar o dia 15 de fevereiro, Dia Internacional da Síndrome de Angelman, uma data oficial no calendário do Estado de São Paulo.
Expressamos nossa profunda gratidão à Deputada Andréa Werner pela atenção ao nosso pedido. A oficialização desta data não é apenas um símbolo, mas um passo importante para promover a inclusão e suporte às famílias e indivíduos afetados pela Síndrome de Angelman. Esta iniciativa destaca os desafios enfrentados por nossa comunidade e serve como catalisador para a mobilização contínua por políticas públicas eficazes e garantia de direitos.
Agradecemos imensamente a todos os envolvidos, cujo empenho e sensibilidade foram essenciais para o reconhecimento desta causa vital. Com gratidão e renovada esperança, continuamos comprometidos em plantar HOJE as sementes para um FUTURO MELHOR para a comunidade Angelman.
O Projeto de Lei n° 722/2024 está disponível abaixo para download.
II Paraná Rare Diseases Symposium: Achievements and Challenges
February 29, 2024II Paraná Rare Diseases Symposium: Achievements and Challenges
Blog Post written by Fernanda - Angelman advocate and mom to a girl who lives with AS
GAMAS Initiative participated in the II Paranaense Symposium on Rare Diseases: Achievements and Challenges. The symposium aimed to expand access to crucial information that could significantly influence the diagnosis and management of patients.
The event was marked by the presence of renowned experts from the Brazilian medical community, who participated in discussions on the latest topics with attendees, including professionals from Public Management, Education, Social Assistance, and offering perspectives through patient and family narratives.
Dr. Mara Lúcia Schmitz Ferreira Santos, a pioneer neuropediatrician in Brazil in the diagnosis and treatment of rare diseases, highlighted important aspects of diagnostic hypotheses for Angelman syndrome that enable doctors with this knowledge to expedite the process. The doctor clarified:
"A child sometimes comes to the office wide-based gait, a smile on the face, with intellectual disability and drug-resistant epilepsy... if the physician is able to identify these clinical aspects and than check the characteristic pattern of the EEG, the child can be diagnosed with Angelman syndrome faster and more efficiently."
This meeting highlighted the importance of raising awareness to facilitate early diagnosis, treatment, and care for rare individuals in Paraná.
#rarediseaseday #rarediseaseawareness #angelmansyndrome #raroseuapoio #fevereirolilás #doençasraras #sindromedeangelmanAAC in School: The story of an Angelman family
April 20, 2024AAC in School: The story of an Angelman family
Blog Post written by Priscila - Special Needs advocate and mother of a boy living with Angelman syndrome
When we think of school as a place where a child spends much of their day, it is crucial that a non-verbal child has access to AAC. To achieve this, it is necessary that their communication partners within the school know how to use the child´s system.
It is not always easy to bring this issue to school. Although communication is a human right, many schools refuse to acknowledge and implement this communication within their spaces.
I was invited by my son's school coordinator to talk about AAC, Augmentative and Alternative Communication, to teachers, assistants, and anyone else interested in learning more about the subject. It was challenging, but necessary, as parents of a child with complex communication needs, it is our role to bring information to all circles of the child's life. I was nervous but very happy to have this opportunity. In a room with about 25 people, I was able to raise awareness not only for my son but also for other children who may come to use AAC.
The importance of this system being available in all environments was promptly met. The school also provided several copies of the AAC low tech book, making it available for other children learning to use it as well.
Thematic boards related to school spaces, such as bathrooms, libraries, parks, cafeterias, and classrooms, were also spread out to have AAC available everywhere. In addition, the support professional always carries the electronic device with her, so that my son has the opportunity to express himself at any time. We know this is not the reality of most schools, but we want to convey that it is possible and necessary.
Communication is a human right! We need to give voice to all our children!
#aac #nonverbal #schoolinclusion
Promoting changes: The power of advocacy for Angelman syndrome
March 20, 2024Promoting changes: The power of advocacy for Angelman syndrome
Blog Post written by Fernanda - Angelman advocate and mom to a girl who lives with AS
What is "advocacy"
The term "advocacy" refers to a set of actions aimed at influencing public policies, laws, and regulations in favor of a specific cause or group. More than just legal representation, advocacy involves a wide range of promotional and support activities, such as public campaigns, lobbying with legislators, and educational actions to raise awareness among the public and decision-makers about the needs of a specific population. This organized effort seeks to ensure that the voices of individuals or communities are heard and considered in spaces where important decisions are made.
Why promote advocacy for Angelman syndrome
Angelman Syndrome presents challenges that are often not fully understood by public policy makers and society in general. It is vital that elected representatives are made aware of the daily difficulties faced by families, so they can act to promote research and improvements in care. Advocacy highlights these issues, educating policymakers about the specific needs of these individuals and mobilizing resources for the development of effective solutions.
Advocacy for Angelman Syndrome in Washington D.C.
On March 7, 2024, the Angelman Syndrome Foundation (ASF) and the Foundation for Angelman Syndrome Therapeutics (FAST) made history by organizing the first Congressional Advocacy Day for Angelman Syndrome in Washington D.C. The event gathered 65 advocates from 25 states and the District of Columbia, who participated in 111 meetings with Congressional representatives. The foundations prepared participants with special training the day before the event, ensuring everyone could share their experiences and the community's needs in a cohesive and impactful way. Main requests included the inclusion of Angelman Syndrome in the medical research program of the Department of Defense, the adoption of more sensitive outcome measures by the FDA, and the development of a roadmap for biomarkers and clinical outcomes by the NIH.
Families should know what to ask for and whom to ask
Following the efforts in Washington, it is essential that families affected by Angelman Syndrome communicate in an organized and clear manner with policymakers. Articulating a well-defined goal and pressing for clear policy priorities are crucial for legislators to understand and meet specific demands. This strategic approach increases the likelihood of achieving significant legislative advances and the implementation of more effective public policies.
#advocacy #angelmanadvocacy #angelmansyndrome #rarediseaseadvocacy
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