About us

It's a pleasure to meet you! We are Fernanda and Daniel, proud parents of two sweet girls. Our youngest, Gabi, lives with a rare disease. Learn about the story behind Gamas Initiative.

Our story

Gabi was a much expected addition to our family. She was born during the COVID-19 pandemic lockdown in August 2020.

The period of total isolation lasted for months and was extremely difficult for our family. Gabi showed differences when compared to her older sister, but we assumed that the setbacks in her development were due to the forced isolation we were going through.

At 11 months old, our pediatrician stated Gabi had a global developmental delay and we immediately started several early intervention therapies.

In addition to experiencing arm tremors and having difficulties crawling, sitting, and babbling, Gabi suffered from severe symptoms of gastroesophageal reflux and sleep disorders.

From 18 to 26 months of Gabi’s life, we embarked on a quest for a diagnosis. Her second birthday was a particularly tense time for us. After months of uncertainty, a specific genetic test explained the reasons behind all the symptoms Gabi was experiencing: Gabi has a mutation in the UBE3A gene on chromosome 15, a rare neurogenetic disorder called Angelman Syndrome.

Receiving this diagnosis caused a profound transformation in our family life. Initially, the uncertainties seemed devastating. Overcoming the initial shock took months of reflection and maturation, as well as a tremendous amount of faith and resilience.

However, over time, and through Gabi herself, we came to see that Angelman syndrome is just one of her many characteristics, and it is insufficient to define who she is as an individual.

We redefined our understanding of what has the most value in our lives, sought to evolve, and celebrated each advancement enthusiastically.

With the support of competent healthcare professionals, and the affection of friends and family, we found ways to provide inclusion, continuous development, and a loving environment for our little giant.

Angelman Syndrome presents us with many challenges daily, but it also shows us the beauty in human diversity.

Although Gabi is non-verbal, she is extremely communicative, and we explore different forms of communication and interaction through AAC -Augmentative and Alternative Communication - and gestures.

We have also become enthusiasts of the scientific advancements in neurogenetics. We closely follow the development of promising research and clinical trials aimed at developing clinical treatments for Angelman Syndrome. Our hopes for a better tomorrow, with a higher quality of life, are immense.

Our Initiative

Since Gabi’s diagnosis, we have been actively involved with the Angelman community, both locally (we live in Brazil) and internationally.

We have experience in coordinating volunteer work groups in various types of organizations, for example at AFS (American Field Service), a century-old organization present in more than 100 countries with over 40,000 volunteers worldwide.

Our previous life experience—living, working, and studying in various countries—taught us to deeply value global collaboration. From this mindset, we envisioned the importance of global collaboration in the context of Angelman syndrome, and rare diseases as a whole.

We are people of initiative and committed to everything we involve ourselves in. And it could not be different in relation to Angelman syndrome...

Motivated by this understanding, we founded the Gamas Initiative for Angelman Syndrome in 2023, honoring Gabi’s life journey and all those living with this condition.

Gamas Initiative is a non-profit organization registered in Brazil, dedicated to promoting positive transformations for individuals and families affected by Angelman Syndrome.

We are a bilingual initiative, uniquely positioned to connect individuals, families, communities, and organizations around the world, encouraging global collaboration and intensifying efforts in awareness and advocacy — both in Brazil and internationally.

Our mission

is to plant seeds of positive transformation. Learn more about it...

Never heard about AS before?

Learn about Angelman Syndrome, symptoms, and causes. Click here...

Join us. Register to receive more information...

Testimonials

"Receiving a diagnosis is never easy, we felt lost in a completely unknown world. Walking alongside families who are on this journey and who truly understand us makes all the difference.

Meeting Fernanda and Daniel was very special for us, seeing their dedication and work for people living with Angelman Syndrome fills us with hopes of a better future. We support Gamas Initiative."

Priscila, Angelman mother

"It was a gift for us to meet Gabi and her family. ❤

My daughter was also diagnosed with Angelman syndrome, and having access to another family with the same feelings, experiences, joys, and pains was very important. The Gamas Initiative is seeking to help spread important information about Angelman syndrome, and that is beautiful!

It's crucial that more people learn about and understand this condition so that families who receive this diagnosis feel supported and understood. An initiative that is dedicated to spreading knowledge about rare diseases as Angelman Syndrome is a valuable source of support and guidance for families.

It's essential that families have access to accurate and up-to-date information about symptoms, treatments, and available resources to ensure the best possible care for their loved ones. By sharing knowledge about Angelman Syndrome, the Gamas Initiative is contributing to a more inclusive and welcoming world, where all people, regardless of their conditions, can receive the support and understanding they need. Together, we can build a more informed and supportive community.

Thank you, Fernanda and Daniel, for all your efforts❤."

Lilian, Angelman mother

"When we received the diagnosis of Angelman Syndrome for our daughter, we were very shocked. We then began searching for information about the syndrome because the neuropediatrician we were seeing at the time did not offer us support or information.

We managed to find some useful websites and others that, unfortunately, we wish we hadn't read because they are outdated. Many of the contents heavily emphasized listing the signs and symptoms of the syndrome, which scared us even more and made us very anxious about our daughter's future, thinking that she would have all the problems described.

Faced with this pessimistic scenario, we decided to seek out real individuals with AS and families, and that's how we came across the Instagram accounts of Benjamin and Gabi (Gamas Initiative). It was a relief for our hearts, as we saw beautiful and happy children, showing that it is possible to live with the syndrome in a lighter way. Of course, challenges exist because people with AS have their difficulties. However, it is also possible for these individuals to adapt and enjoy the world in unique ways.

We congratulate and thank Fernanda and Daniel for the high-quality content available on the Gamas Initiative website, so that other newly diagnosed families can learn about the syndrome in a more caml and compassionate manner."

Luciana and Pedro, Angelman parents

©2024 GAMAS

Google Sites

Report abuse