“Solving complex problems with the right partners matters.”
Deriving inspiration from her experiences in leading health research work on neurodegenerative diseases, Board Overseer of the Harvard University Atty. Geraldine Acuña-Sunshine highlighted the importance of building on strategic R&D partnerships for health in her keynote speech during the 39th anniversary of the Department of Science and Technology - Philippine Council for Health Research and Development (DOST-PCHRD) last March 17, 2021.
Atty. Acuña-Sunshine shared how her work is inspired by her brother, Dr. Patrick Acuña, who is affected by the rare Filipino disease called X-Linked Dystonia Parkinsonism (XDP). "He is the reason why I do what I do, and why I am here today,” she said.
Affecting Filipino men mostly from Region 6, XDP may cause the patient’s inability to work or move in a normal way. As a result, the patients may suffer from depression, isolation, and the loss of livelihood which may lead to the inability to afford food and medicine, among others. This affects not only the vulnerable patients but their families and the community as well.
To help alleviate the burdens of this disease, she directs the Collaborative Center for XDP at the Massachusetts General Hospital (MGH), which seeks to understand XDP’s pathogenic mechanisms and develop cutting-edge therapies and interventions in collaboration with their network of academic, pharmaceutical and bioengineering partners. The center has made significant headway through actively funding several studies involving genomics and transcriptomics, cell and animal modeling, neuropathology and brain banking, gene regulation and epigenetics, and neuroimaging and deep brain stimulation.
Through the Center, they were able to attract partners and experts including physician-scientists from University of the Philippines, Philippine Genome Center, Movement Disorder Society of the Philippines and Makati Medical Center, among other prestigious institutions. The DOST also signed a Memorandum of Understanding with the MGH, which will serve as a pathway to create a stronger, wider research network with relevant institutions at Harvard University.
Further, Atty. Acuña-Sunshine also led the establishment of the Sunshine Care Foundation which provides funding and support to research projects dedicated to neurodegenerative diseases, and provides medical care and humanitarian aid to clinical patients and affected families.
In partnership with the Philippine Genome Center (PGC) and the DOST, she also leads the study “High Throughput Prevalence Study for XDP,” which analyzes de-identified newborn blood spots to gather information on the prevalence and geographical distribution of the disease. This process is envisioned to be used as a powerful epidemiological mechanism to quantify the prevalence not only of XDP but of other genetic conditions in the country as well. Thereby helping address the limited data on the number of patients of XDP and other diseases, and contribute to crafting evidence-informed health and wellness policies.
According to Atty. Acuña-Sunshine, her endeavor in XDP research provided her three important lessons:
First, forging partnerships can make a difference in research undertakings or initiatives. “Whether it's addressing a pandemic like COVID-19 or diseases specific to the Philippines like XDP, having people with the right diversity of perspectives and expertise is key to effective and efficient problem solving,” she said.
Second, continuing to expand scientific knowledge in a variety of fields, and investing in infrastructure and people to build their talents will also play a critical role in trying to solve healthcare problems.
Lastly, she highlighted that the Philippines can also be a model for other developing countries, in terms of developing their research approach for unique healthcare problems and advancing scientific knowledge for all.
“Our work has shown that we can allocate our resources wisely, while building the science and technology infrastructure we need to meet the health challenges that are here and are yet to come,” she concludes.
The DOST-PCHRD celebrated its 39th anniversary last March 17, 2021 through an online webinar with the theme Strategic R&D Partnership for Global Health. Aside from Atty. Acuña-Sunshine, the webinar was also attended by other experts in the field of health research, including DOST Undersecretary for Research and Development Dr. Rowena Christina Guevara, Italian Liver Foundation Scientific Director Dr. Claudio Tiribelli, and UP Manila College of Public Health Dean Dr. Vicente Belizario Jr..