|Juvenile arthritis patients and their families recently visited NIAMS to learn about cutting-edge scientific discoveries.
Armed with test tubes, strawberries and cheek swabs, about 30 juvenile arthritis (JA) patients and family members saw what DNA looks like up close when they conducted hands-on experiments alongside
NIAMS researchers during a recent visit to the NIH campus.
To offer insight into NIAMS research on rheumatic and musculoskeletal diseases, Clinical Center meeting
rooms were transformed into miniature labs where the group conducted scientific experiments and met researchers who discussed their work. The patients and families came from around the country
to attend the Arthritis Foundation’s Juvenile Arthritis National Conference, an educational event focused on health, wellness and fun for children affected by arthritis, lupus, myositis, ankylosing spondylitis and other rheumatic diseases.
The visit is one of several recent tours hosted by NIAMS to showcase NIH and educate the public about the importance of research here. The group spent the morning hearing from NIAMS’s senior leadership, including rheumatologists Dr. John O’Shea, scientific director, and Dr. James Witter, a health scientist administrator, to learn about ongoing
pediatric rheumatology research and discoveries.
Witter highlighted the importance of basic research during his presentation, saying, “Biologics
elucidate pathways in rheumatic arthritis. And, through genetics research, we can figure out which populations are at higher risk for lupus and unravel what’s going on in diseases like these.”
Bernard Murphy, chair of the Juvenile Arthritis Alliance Leadership Group and parent of a daughter
with JA, acknowledged the work of NIAMS and its scientists. “You’re helping to unravel the mysteries
of this disease. What you’re doing—this is our hope. We continue to hammer home that research dollars are a good value…Thank you for 25 years of trying to beat this disease.”
A 12-year-old patient also took the opportunity to present a plaque to the staff of NIAMS expressing the group’s gratitude for the researchers’ work to “make everybody’s life better.” She shared her emotional
experience living with JA, stating that even though she takes two shots and 14 pills a day, she still manages to play softball, baseball, ride her bike and play with her dog.
The patients spent their remaining time on campus
meeting with scientists and participating in lab exercises. “With the hands-on activities, they were really having fun and began to have an appreciation for how research works,” said O’Shea.
Several patients and family members learned about chromosomes and genes and saw what DNA looks like with O’Shea and NIAMS rheumatologist Dr. Raphaela
Goldbach-Mansky, along with their lab assistants. With test tubes in hand, they extracted DNA from their own cheek cells or from strawberries. They were amazed to see the stringy, white DNA suddenly appear.
“I liked doing the experiments because it’s something I would never do in biology
class,” said one patient. “Here, they explained it in a fun and engaging way.”
Another group, led by Dr. Robert Colbert, chief, NIAMS Pediatric Translational Research Branch, and his lab assistants, mixed calcium and phosphate solutions to learn how these minerals make bones strong; used chicken bones to feel the difference between normal bones and ones that need to be treated; peered under a microscope to see bones from a mouse’s head and tail; and viewed x-rays of humans and obese rats to see the difference between healthy and diseased bones.
“This visit opened my eyes to something different,” said one parent. “As advocates,
we need to understand the roots of research. Otherwise you don’t know what you’re fighting for.”
Many parents wanted to learn about getting more involved in research and enrolling their children in clinical trials. After touring the Clinical Center’s pediatric
rheumatology clinic where such trials are conducted, both parents and children
alike were encouraged.
“This visit is heartening,” said one parent. “It gives you courage and hope. Meeting
with the researchers is a more positive and human connection. These are real people and they care about us.”