Reasons for Research
Patients and scientists explain why medical and health research must be a higher national priority
Patrick Mark Kinzle Risha, Chronic Traumatic Encephalopathy (CTE)
Patrick is no longer with us. He tragically died from suicide, but science is telling us he actually died from CTE. Until that fateful night when he called his mother with his dog’s leash around his neck, no one knew what was causing the rapid mental decline in such a young, gifted and handsome Dartmouth graduate. When Patrick’s brain was autopsied and CTE was discovered, his family made a commitment to inform other families of the dangers and symptoms of CTE through the Patrick Risha CTE Awareness Foundation.
CTE is caused by repeated mild TBI, the kind that occurs routinely when athletes head the ball in soccer, check each other in hockey, and hit and tackle in football. Many neurologists believe children may be the most vulnerable of all. Patrick started playing football when he was only 10 years old. CTE is becoming a prevalent problem for military veterans and domestic abuse victims as well. CTE takes time to develop. It can take a decade, often presenting itself long after the repetitive brain trauma activity has ceased. Its symptoms include anger, memory loss, confusion, anxiety, impaired judgment, impulsivity, paranoia, aggression, depression, addictive behaviors and suicidal thinking.
In Patrick’s name, his family seeks more research to find tools for the prevention, diagnosis, treatment and cure of CTE. Such research will lower crime, suicides, and drug addictions in our country, while saving families from the heartache of losing a loved one through such a tragic mental collapse. “We need to recognize that the human brain is more fragile than we ever knew,” says Karen Kinzle Zegel, Patrick’s mom. “With this new awareness and continued research, lives will be spared.” For more information about the Patrick Risha CTE Awareness Foundation, visit StopCTE.org.
Trish and Marysa Gavankar, Food Allergies
Trish Gavankar, a registered nurse from North Carolina, got her first introduction to food allergies when her daughter Marysa was born. At 4 months, Trish noticed that her daughter was not gaining weight and would react negatively to all food- even new food introduced via breast milk. After many frustrating, sleepless months of limited answers from the doctors, she decided to try and feed her daughter yogurt in an attempt to give her some nutrition and protein. That’s when things got even worse. Immediately upon eating the yogurt, Marysa started rubbing her eyes and screaming and blisters broke out all over her face. “Even with my extensive medical training, it was like a waking nightmare,” Trish remembers. After more tests and agonizing doctor visits, Marysa was diagnosed with nearly 20 food allergies.
That was 13 years ago. Although food labeling laws and awareness have improved the lives of those with life-threating food allergies, the Gavankar family, and many like them, still live in constant fear of the next allergen exposure. Her family is prepared to immediately inject epinephrine at all times and even takes their own food with them everywhere to reduce the risk of reactions. Trish has become a very passionate advocate for research. She says, “Hope is the best gift I can give my child, and research gives us hope.” Trish, who advises individuals and families with food allergies and sensitivities, is very active with Food Allergy Research and Education (FARE) and hopes that over time, families with food allergies will no longer have to suffer. Her message for those without food allergies looking for a way to help is to listen to those involved in the food allergy community and what their needs are, “It doesn’t take much to be a hero.”
Nico Clothier, Spinal Cord Injury
Nico was a high school sophomore who loved to play soccer and spend time with his friends and family– but an unforeseen, tragic accident during a community service project in 2009 left him with a broken neck, causing a spinal cord injury (SCI). He spent six months in a comatose-like state only to awake and realize he couldn’t speak, move his body below the neck or even breathe on his own.
With intensive physical therapy and determination, Nico weaned himself off the ventilator over the course of a year and regained his ability to speak. With time and more therapy, Nico regained some sensation and use of his arms. Amazingly, he graduated from high school on time with his peers. Now entering his fourth year at UC Berkeley, Nico continues to advocate for awareness about SCIs, something he began doing in high school. “Most people don’t realize that spinal cord injuries are so prevalent. One in every 50 people has some disability with paralysis, that’s a huge number,” Nico said.
The disabled student’s residence program at Berkeley, which emphasizes independence, has allowed Nico to enjoy the full college experience as well as meet other young adults with similar disabilities. He remains hopeful that scientific research may one day help him and the other 270,000 Americans with SCIs walk again. The possibility motivates him to keep his body in the best possible shape. “I want to be on the frontline for new research because I am sick of sitting down. I want to stand,” he said. Although he knows that more funding is needed before new treatments and cures can be developed, he remains confident, “I know the research is coming.”
LAUREN FLEMING, BORN THREE MONTHS PREMATURE
Born three-and-a-half months premature, doctors weren't sure if Lauren would survive. Her parents were told by doctors to prepare for the worst, but her father Densel says, "Lauren did everything doctors said she wouldn't be able to do — like cry and breathe on her own." Lauren survived her five-month stay in the newborn intensive care unit. Advances in biomedical and health research supported by the March of Dimes and the NIH made it possible for Lauren and her family to endure the difficulties of her pre-term birth. Additional research can help reduce the rates of pre-term birth and improve the care of premature infants. As the 2011 March of Dimes National Ambassador, Lauren and her family traveled the country, sharing her inspiring story to help raise awareness of premature birth and encourage families and companies to walk with them in March for Babies.® Read more about prematurity on Research!America's fact sheet here.
Kamila Alexander PhD, MPH, RN; Johns Hopkins UNIVERSITY school of nursing, Maryland
"Too many of our global citizens have diminished prospects for attaining optimal health. In my research, I examine social determinants that impact health inequities. Socioeconomic disadvantages derived from living in poverty, limited educational opportunities, and historical discriminatory practices drive public health problems such as intimate partner violence, HIV/AIDS and substance use. It is important to expand our currently narrow research agendas to allow for multi-level approaches to solving these complex public health problems.
Funding for research that advances behavioral and structural approaches to address some of society’s greatest public health burdens is unfortunately getting smaller and smaller. Thus, finding money to do my work is the greatest challenge I face as an emerging scientist. Our lives are all interconnected, so opportunities to discover ways to tip the scale toward better health for those living with the fewest resources can only improve our global society."
DENISE INMAN, PHD; NORTHEAST OHIO MEDICAL UNIVERSITY
“I research how energy mismanagement in the central nervous system contributes to neurodegenerative diseases such as glaucoma. Glaucoma is the leading cause of irreversible blindness and afflicts three million Americans.
It’s important that researchers have the time to unravel the complexity of disease in our quest to develop disease therapy. All academic research scientists spend a significant amount of time trying to secure and retain research funding; I am no different. More of my time could be spent actually doing the work if research funding were more robust. Strong research funding is vital to the progress of medicine and biotechnology in the United States. Research funding is an investment in the future—we can’t know that every hypothesis tested is going to reveal something profound, but we do know that not investing will ensure no progress at all.”
CALEPH WILSON, PHD; UNIVERSITY OF PENNSYLVANIA
"My research seeks to 'teach' a patient's immune system to destroy cancer and HIV-infected cells. With taxpayer support, our research has aided patients that had little hope of surviving cancer. Continued federal funding is critical not only to maintaining current advances but also to fostering future cures for human malignancies and infectious diseases.
Scientists and partner organizations need to encourage our elected officials and policy makers to provide sustained and predictable funding for these efforts. Beyond research outcomes, biomedical research advocacy will also improve public health, stimulate the economy and provide well-paying jobs for generations to come."
Katie Page, MD; Keck School of Medicine at university of southern California
"Diabetes and obesity are some of the most critical health issues affecting us today. More than 9% of the U.S. population suffers from diabetes, and the number of people affected by diabetes continues to rise. More than 35% of adults and 17% of children are obese. Preventable, obesity-related diseases, including diabetes, are responsible for the majority of our public health care spending.
My research focuses on identifying the underlying causes of obesity and diabetes at the earliest stages of life so that more effective strategies can be developed to reduce the prevalence of these conditions.
As a physician scientist, I see the negative impact that diabetes and obesity have on the health and well being of my patients. Finding more effective ways to treat and ultimately prevent obesity and diabetes is critical. Federal funding helps make this research possible. And because of our research's potential impact on both the public’s health and healthcare spending, these funds are a direct investment into our future.”
Scientists Explain Why Research is At Risk
Funding cuts will jeopardize scientific discovery and economic growth. In the following videos, scientists discuss how basic research drives medical progress, hope and jobs.
"Federal funding is very important to improve human health."
—Sarah Kucenas, PhD, assistant professor of biology, University of Virginia, Charlottesville, VA
"My lab is now less than a third of the size it was just a few years ago and we now have many research projects that have to be halted..."
—Kerri Mowen, PhD, assistant professor, The Scripps Research Institute, La Jolla, CA
"I'd encourage you to take this special time in science to up your funding for basic research."
—Miles Pufall, PhD, assistant professor, University of Iowa, Iowa City, IA
To view more videos, visit Research!America's YouTube Channel at www.youtube.com/researchamerica.