Executive Director, Batten Disease Support and Research Association (BDSRA)
BDSRA is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action. Founded in 1987, by parents seeking to build a network for those diagnosed with Batten disease, BDSRA is now the largest support and research organization dedicated to Batten disease in North America. BDSRA believes that to effectively unravel the mysteries of Batten disease, the worlds of medical science, research, and families must work together toward a common goal: discover treatments and cures while assuring a better quality of life for those living with the disease.
Meet TRNDS Speaker Tauna Batiste
Why are you participating in TRNDS 2019?
BATISTE: As the leader of a patient-focused organization, I want to stay in the conversation on what innovation is happening in our space. TRNDS is an excellent opportunity to hear from our colleagues and better inform and support our members.
What do you see as the biggest opportunities for accelerating therapeutic development in the 21st century?
BATISTE: The world has grown smaller; as in it is easier to find and connect with those who at one time felt so obscure. Having greater access is leading to greater discovery and in the end new therapies. This partnered with the speed of scientific technology is changing the approach to medicine.
Secondly, we have more informed patients – which can lead to an acceleration of its own.
How is the increasing use of modern technologies changing the field of clinical research?
BATISTE: The new technologies in diagnosis are allowing clinical trials to recruit patients who are not as far progressed. Additionally, families are able to get involved directly because of modern communication.
Share with us some of the most exciting development in your organization.
BATISTE: We have found our unique ability to partner with clinical trials to support families in a seamless way. Building our existing relationships to the patient community, when we are contracted as clinical patient support, the patients have a better overall experience.
Additionally, we have further embraced our role as liaison and have been instrumental in representing the patient population both to industry and government (FDA).
What is a critical topic you’d like to see discussed at TRNDS 2019?
BATISTE: We would be eager to learn more about how the research community is embracing combination therapies for complex diseases that are yet to have a cure. We would also like to discuss the ethical considerations when treating pre-symptomatic patients with gene therapy.
What challenges lie ahead in the rare disease space?
BATISTE: Limited funding, changing natural histories, and small numbers of available/qualified participants for clinical trials.