Elizabeth Schiavoni, MS
Alexandria Trujillo rallied Western New York to organize a March for Science in January 2017; creating a team of diverse advocates for science education, research funding, and evidence based policy. Alexandria is also an advocate for vision research as a PhD student studying therapies for retinal degeneration in Dr. Jack Sullivan’s Lab at the University at Buffalo and a Science Communication Training fellow for the professional society, ARVO (Association for Research in Vision and Ophthalmology).
“I work on a genetic therapy to block negative health effects from harmful mutations in rhodopsin. Rhodopsin is a protein that allows eyes to detect light, which makes vision possible. In a disease called Autosomal Dominant Retinitis Pigmentosa (adRP), mutations in rhodopsin DNA create nonfunctional rhodopsin protein that collects in retinal cells and kills them, causing progressive vision loss and blindness. Since it is a dominantly inherited disease, patients have a 50% chance of their children receiving the same damaged DNA and disease outcome. My lab group hopes to develop a gene therapeutic to treat adRP utilizing ribozymes, pieces of genetic material that catalyze the breakdown of the toxic nonfunctional rhodopsin. We hope to build a protocol for developing ribozyme gene therapies for other inherited conditions as well.”
“I was selected as an ARVO Science Communication Training Fellow to learn to communicate my research to the public. ARVO is where scientists and doctors in vision can learn from each other and also advocate.”
ARVO is asking for congress to choose to consistently increase in the NIH’s (National Institute of Health’s) and NEI (National Eye Institute’s) budgets in the face of caps on non-military discretionary spending.
“There are a lot of labs researching in areas of healthcare impacting millions of Americans with great potential for solutions that do not get funded because of a limited budget. If more people were able to work in these labs, more research could get done, and better therapies would be developed faster.”
As of 2014, 82% of Americans believe it is important that the government supports research that focuses on improving prevention and treatment of eye and vision disorders. Over 143 million americans age 40 and over are blind or have significant vision impairment and 37 million have an age-related eye disease according to the 2010 U.S. census. The 2014 cost for vision disorders in the U.S. was $145 billion. Costs of vision disorders will double and triple as the U.S. population ages and diabetes rates continue to rise.
“I participated in ARVO’s advocacy day on Capitol Hill where I met staff members from the offices of Western New York and New York State representatives; Congressman Brian Higgins, Senator Kirsten Gillibrand, and Senator Chuck Schumer.”
“I got to put a face on the research budget and facilitate a relationship beyond numbers on a page. I got to say ‘Hi, I’m a PhD student in Buffalo, I really care about doing this research in this community and I want to keep doing it.’”
“The staffers I met with had job titles in health and science and some of them had degrees in science. It was great to see representatives that support NIH budget increases hiring people who understand the scientific method.”
“As part of my ARVO Science Communication Training Fellow development, I will be hosting a table at the 2018 Buffalo March for Science Education Fair with information and activities related to vision science.”
“I care about the March for Science because I think when we have done all the research and have all the information we can create the most fair policies based on evidence. Science can give us solutions to the problems we face so we should use it more. Science needs to be available to all people and communicated in a way that non-experts can understand so it’s actually useful to people’s lives. If you’re an expert in your field you should be able to communicate your work to anyone of any age and education level. If everyone had access to science the world would be a better place for everyone to live. There would be more people asking questions, working together, and developing solutions.”
“I care about diversity in science and supporting underrepresented students as they become scientists. The March for Science is a good platform to highlight diversity issues within the scientific community. If we spend the time to learn how to share knowledge, barriers will be broken down and scientists won’t be seen as elite and separate from communities. Any person should be able to be a scientist.”
RSVP to the 2018 March for Science here: https://www.facebook.com/events/1477762595683712