On December 7th, a remarkable milestone was achieved for the TS community in Latin America. The first meeting of the TTAG Latin America Ambassadors brought together advocates, families, and professionals from across the region to address the realities and challenges of living with Tourette Syndrome.Participants from Colombia, Peru, and Argentina shared their unique
perspectives, highlighting common struggles and proposing collaborative solutions.
A United Voice Across Borders
The event was coordinated by Roxana Apollonio Cabrera, neuropsychologist and TTAG board member, who emphasized the meeting’s purpose:
– Raising awareness about Tourette Syndrome in Latin America.
– Sharing experiences and identifying the most pressing needs in the region.
– Creating and disseminating resources to improve the quality of life for people with TS and their families.
Highlights of the Meeting
1. Diverse Realities, Shared Challenges
In Colombia, a lack of formal TS associations means families often
face challenges alone. Ambassador Rosario Libreros has been
pivotal in raising awareness through social media and rural outreach
programs.
In Peru, few specialists understand TS, and high medical costs make
access to care nearly impossible for many. Karina Barco Ríos
provides critical support to families, often becoming their first contact
for guidance.
In Argentina, the story is one of active advocacy but ongoing
struggles. Andrea Bonzini, founder of an association, shared her
journey of supporting families while pushing for recognition of TS in
the national healthcare system.
2. The Weight of Diagnosis
The meeting shed light on the emotional and logistical challenges of
receiving a Tourette diagnosis. For many families, it’s a moment of
relief mixed with fear of the unknown. Participants highlighted the
importance of early diagnosis and access to specialists, as well as the
need for Spanish-language educational materials.
3. Voices That Inspire
Teenagers and families shared their personal stories, offering a
glimpse into the daily struggles of living with TS. Alex, one of the
participants, spoke about acquiring new tics while attending school
camps, reflecting the impact of social environments on TS symptoms.
Meanwhile, a peer addressed the son of another participant,
expressing understanding and solidarity with his experience.
4. Proposals for the Future
The ambassadors committed to:
– Translating and creating educational resources in Spanish.
– Organizing additional webinars and workshops to support families and professionals.
– Building networks of support and advocacy to push for policy changes in education and healthcare.
A Call for Collective Action!
The event concluded with a powerful message:
Unity and collaboration are the keys to change!
Participants acknowledged that while the road ahead is long, every effort, whether sharing
information, supporting a family, or advocating for policy change, contributes to a better future for the TS community.
This meeting marked the beginning of a series of regional events that will strengthen ties across Latin America and amplify the voices of individuals with Tourette Syndrome and their families. Together, the TTAG ambassadors are proving that “working together transforms
lives.”
Join the Movement as Ambassador
Stay tuned for upcoming TTAG webinars, meetings and resources.
Let’s continue building a more inclusive and supportive world for
everyone living with Tourette Syndrome.
Want to know more about TTAGs Ambassador Program?
Maybe you want to be an Ambassador yourself?
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