During the 2018 Brain Awareness Week (BAW), IBRO is featuring stories from our Global Advocacy Initiative seed grant awardees who have made important impacts in their local communities. Every region of the world has its specific challenges when it comes to raising awareness about the brain, ranging from no awareness at all to competing priorities in policymaking circles. Our seed grant awardees have identified and addressed these challenges by organizing culturally sensitive and socially relevant activities that highlight specific brain issues directly affecting their local communities.
Brain Awareness Impact Story – Mexico
Awareness of spinocerebellar ataxia type 7 (SCA-7): A public health emergency in Veracruz, Mexico
In the state of Veracruz, Mexico, a public health crisis has developed as the result of an inherited disease of the central nervous system called spinocerebellar ataxia type 7 (SCA-7). It affects families in this area that produces a high general prevalence of 10.63/100,000 inhabitants. The disease also represents a potential health problem outside of Veracruz due to the potential immigration of asymptomatic individuals (disease carriers displaying no symptoms) who might carry it to other states as well as other countries.
SCA-7 is characterized by progressive cerebellar ataxia and macular degeneration. The former is an impairment of specific nerve fibers carrying messages to and from the brain resulting in the degeneration of the cerebellum (click the link for an entertaining BrainFacts.org video on the cerebellum), a lower area of the brain that plays a pivotal role in movement and coordination. Macular degeneration is the deterioration of the macula, the central portion of the retina, and could ultimately result in blindness. Recognizable symptoms that appear in individuals with SCA-7 include uncoordinated eye movements, unsteady gait, loss of motor control, unclear speech (dysarthria) and difficulty swallowing (dysphagia).
Research on the Veracruz SCA-7 cluster community suggests that the high prevalence of the disease is probably due to the founder effect, a genetic phenomena that occurs when a small group of people separates or becomes isolated from its larger, original population, and gradually becomes its own genetically distinctive group. Unfortunately, poor infrastructure, a lack of political and public interest and budget cuts for basic and clinical research have made it difficult to address the challenges and find treatments for the disease.
In order to improve this situation, global advocacy seed grant awardee, Dr. Luis Beltran-Parrazal (Universidad Veracruzana), and the Fundación Beltran-Morgado para el avance y difusión de la neurociencia en Veracruz (a group of professors and graduate students committed to neuroscience advocacy in the state), ran an awareness and advocacy campaign in 2017 on ataxias to educate and attract support from the public, healthcare professionals and policymakers. Dr. Beltran-Parrazal and his team developed enjoyable and educational activities to attract a broad audience and facilitate learning.
Their activities included the following: A free and public lecture, The Brain and Me, about SCA-7; lectures and public activities during the 2017 Brain Awareness Week organized by the Brain Research Center at the Universidad Veracruzana and the Southeastern Chapter of the Society for Neuroscience (SfN); a series of interdisciplinary scientific conferences; an educational symposium for legislators to sensitize the government about public health problems related to neurodegenerative diseases; molecular diagnosis tests; and rehabilitation and social inclusion programs.
This comprehensive campaign took place in several towns (Xalapa, Huatusco, Veracruz and Nuevo León) and involved 900 participants including middle and high school students, patients and caregivers, healthcare professionals, undergraduate and graduate students and legislators. In addition, there was widespread media coverage with several newspaper articles, radio shows and a short documentary (all in Spanish). They provided tremendous assistance in increasing attention to the overall effort. Links to these resources can be found at the end.
Reflecting after the conclusion of events, the organizers called for continued support of brain awareness projects in Latin American countries:
“Please do not stop helping projects in Latin American countries. The big cuts in science make the science and its diffusion extremely vulnerable. The social impact of the Global Advocacy Seed Grants is huge. The funding made possible all the activities that we proposed.”
As a direct result of their efforts, local organizers were able to establish a strong partnership between the Fundación Beltran-Morgado para el avance y difusión de la neurociencia en Veracruz and the Ataxia Mexico Foundation. In fact, the two foundations will work together now with the common objective of constructing a center for research and therapy of neurodegenerative disease in Tlaltetela, Veracruz. In addition, in November 2017, representatives from both foundations met with Dr. Albert La Spada from the University of California San Diego in order to expand the scientific exchange of data between the Universidad Veracruzana and his lab. Moreover, Dr. Spada is interested in finding strategies to integrate SCA-7 Mexican patients into clinical trials in the US. Finally, the seed grant events increased visibility for the Ataxia Mexico Foundation within Veracruz society, and professors and students from schools of psychology, architecture and medicine in public and private universities, are now all part of the team of volunteers that help run the food bank and raise funds to support SCA-7 patients.
With such new energy and commitment, IBRO and its founding partners believe that these grassroot actions will pave the way to long-term sustainable support of brain research and activate an informed and engaged global public.
Media Links (In Spanish)
• News Videos
Expediente 4 Nosotros Todo los Investigamos https://www.facebook.com/TVMAS/videos/1683163755087483/
Investigadores de la UV estudian a pacientes con ataxia
• Xalapa “Brain Awareness Week”
Dan a conocer la labor de los neurocientíficos en la Semana Mundial del Cerebro https://www.youtube.com/watch?v=tJJeDrgjJ_k http://www.eluniversalveracruz.com.mx/veracruzanos-personajes/2017/ciencia-invitan-a-semana-mundial-del-cerebro-25656.html
• Ataxia events
About the Global Advocacy Initiative: The Global Advocacy Initiative was established in 2013 by IBRO and founding partners Society for Neuroscience (SfN), The Dana Foundation, Federation of European Neuroscience Societies (FENS), International Society for Neurochemistry (ISN), Japan Neuroscience Society (JNS) and the Australasian Neuroscience Society (ANS). Its objective is to facilitate the development of culturally relevant educational and motivational activities that increase awareness and support for brain research around the world.
About the Brain Awareness Week (BAW): To learn more about BAW and find an event near you, please visit the Dana Foundation website.