Nerds in Harmony Perform CRISPR Cas9
Photo: Chia-Chi Charlie Chang
After delivering her NIH Director’s Lecture, “The Future of CRISPR: What’s Ahead for Genome Editing,” in Masur Auditorium, Dr. Jennifer Doudna attended a reception in the NIH Library. There, NIH’s a cappella ensemble Nerds in Harmony performed their song CRISPR Cas9, sung to the tune of Mr. Sandman for the Nobel Prize laureate. The Nerds presented Doudna with a t-shirt, making her an honorary member.
Photo: Chia-Chi Charlie Chang
First formed by NIH fellows in 2004, the Nerds have a wide repertoire of a cappella renditions, covering barbershop, pop songs old and new, and holiday classics. They perform regularly on NIH’s campus and around Bethesda and Washington, D.C.
Watch the live performance at https://sites.google.com/view/nerds-in-harmony.
Return on Investment
TYCTWD Inspires Student to Pursue STEM Career
When Devon Petty signed up for Take Your Child to Work Day back in 2015, he didn’t realize the life-changing impact that experience would have on his then-11-year-old son.
“My son Jonah decided his career path after his visit to NIH,” said Petty, who is an IT professional in the Office of Research Services Development and Support Branch. Now, Jonah is a sophomore at the University of Maryland-Baltimore County (UMBC) studying bioinformatics and computational biology.
Last summer, Jonah participated as a trainee in the NIH-funded STEM BUILD program at UMBC, during which he co-authored a paper based on his mentored research experience.
And the NIH connection continues. This summer, Jonah will be an intern in the National Human Genome Research Institute’s computational genomics unit.
Several IT-Focused NIH’ers Have Working Lunch with Cerf
Photo: Diana Gomez
Before internet pioneer Dr. Vinton Cerf took the stage in Masur Auditorium, he met several IT-focused NIH leaders for a working lunch.
“We chatted about a variety of topics,” noted one attendee, Clinical Center Senior Investigator Dr. Ronald Summers. He briefly described a few subjects that came up at the meeting, including which “aspects of AI are more likely to be incorporated into health care delivery. [Cerf] thought AI image analytics were more likely than large language models to be incorporated first.”
The small group also discussed when IP version 6 will completely replace version 4. “This is pretty technical, but he seemed to enjoy this topic and talked for quite a while about it,” Summers recalled.
The cadre posed questions as well.
“How can academics—I include government scientists here—innovate in the AI space, given the need for resources far beyond their (and their institutions’) budgets?” Summers asked. “This has to do with the current situation where only the big companies can offer the very high salaries to attract AI talent and can purchase the huge amount of computing resources—e.g., [graphics processing units] GPUs—needed to train large language models and annotate huge datasets. [Cerf] offered to connect us with Google scientists to discuss this and also pitched Google’s cloud offerings.”
Time went by quickly and was well spent, as Cerf engaged the group with candor and shared personal stories.
“Vint has a witty sense of humor and we talked on a broad range of topics, from his early days of developing the internet and TCP/IP to pressing new problems such as adoption of IP6,” said NIH Associate Director for Data Science Dr. Susan Gregurick, who also directs the Office of Data Science Strategy.
“We discussed AI, challenges and new opportunities, including the role of government and the opportunities of researchers and the private sector,” she recounted. “He told us about his trip to Saudi Arabia and the work he is doing with their national health care initiatives to make health care available to all citizens, including those who are remote. The Saudis have an amazing program in telemedicine where devices and sensors are placed in homes and…remote clinics, and citizens engage doctors via remote conferencing platforms, like Zoom, I imagined. The hour flew fast and the meeting was rewarding.”
HHS Deputy Secretary Visits
Photo: Chia-Chi Charlie Chang
HHS Deputy Secretary Andrea Palm attended the groundbreaking ceremony for the Clinical Center’s Surgery, Radiology and Laboratory Medicine wing.
“I’m super grateful to be here today and for being part of the HHS family,” she said. “We all work together to push forward our mission.”
Photo: Chia-Chi Charlie Chang
The new addition illustrates the importance of funding information technology and facilities infrastructure for the public. When it opens, the new wing will be critical for the nation’s health and wellbeing, she said.
Photo: Chia-Chi Charlie Chang
While here, Palm met with NIH finalists for the 2023 Samuel J. Heyman Service to America medals and leadership from several institutes and centers. She also toured National Institute of Mental Health labs.
Supply Center Shows Kids Purchase Power
The NIH Supply Center (NIHSC) hosted a hugely successful Take Your Child to Work Day event, with more than 250 children visiting.
Photo: Emily Ballou
Featured were mock shopping experiences plus giveaways of real NIHSC products for grades K-12. Children learned about various lab, office and PPE (personal protective equipment) items as well as environment-friendly products available through NIHSC. NIHSC staff also demonstrated CAN card use, how to request a new item and how to place an order. Each child went home with an NIHSC pen and tote bag. Parents also participated, asking lots of questions about how to order through the NIHSC, providing feedback on where they’d like to see portable stores or “kiosks.”
Photo: Soujanya Giambone
‘Not Smooth Sailing’
Patient with Rare Disease Navigates Becoming the Captain
“My first memory of rare disease is one filled with fear and uncertainty,” said Abbey Hauser, a young adult rare disease patient and advocate, who shared her story during NIH’s Rare Disease Day.
When Hauser was six years old, she dislocated her knee while playing with toys in bed. Her family was outside having a yard sale; at first, nobody heard her screams.
“Unfortunately, it would not be the last time I’d feel alone or experience fear or uncertainty [which I would for many years] in relation to my medical care and diagnosis of Classical Ehlers-Danlos Syndrome,” she said.
Hauser grew up in Minnesota—the land of 10,000 lakes—where she was often around and on the water. Despite her EDS—a group of hereditary connective tissue disorders—she was a coxswain on the University of Minnesota rowing team. Hauser’s love of the water steered her toward the nautical theme for her lecture that day.
On her rare disease journey, she said, “I quickly learned from a young age that I was not the captain of this ship.”
For young patients with rare disease, the transition from pediatric to adult care can be turbulent. Hauser likened rare disease to a boat. Everyone involved in the patient’s care has different roles to keep the boat afloat and functioning. The kid owns the boat but is not in charge, she noted. At age 18, the patient becomes the captain, regardless of whether they want or feel ready for that role.
“My rare disease boat was inefficiently run most of my childhood,” Hauser said. There was no one specialist coordinating her care and the chain of command was confusing. “I stayed afloat but it was not smooth sailing.”
The week after Hauser turned 18, she had surgery on the knee that started her rare disease journey. For all appointments leading up to the operation, she was a minor. Suddenly, she was the captain, signing documents and making decisions for herself in the adult wing of the hospital.
“I became the captain officially at one of the most vulnerable times we can have as a human—right before surgery,” she said.
During recovery, Hauser wanted to become a better captain. She used her new legal powers to request all of her childhood medical records from the various institutions involved in her care.
She had seen many specialists over the years. “My transition had consisted of waiting until I had symptoms that became intolerable enough to seek out care,” she said. She would then randomly pick a specialist from a web search and start the process all over again, repeatedly explaining her condition, sometimes receiving blank stares when calling it by name.
Hauser offered several suggestions to help spare other young people from such a rocky transition. “We need coordinated clinics helping pediatric patients find adult care or support,” she said. From the time of diagnosis, educate patients early and often on the condition. And, she advised, parents should follow the child’s lead during the transition.
“We can help the kids of the future become strong leaders in their care.”
Now Hear This
Photo: Michael Bender
To sample the incredible variety and diversity of bird vocalization, visit www.birds.cornell.edu/home/. “Cornell Lab of Ornithology is a great resource for audio of the songs,” suggests Dr. Michael Bender, program director, NIGMS Division of Genetics and Molecular, Cellular and Developmental Biology (and NIH Record bird photographer). “Just search by species name and click on the audio button on the species account.”
Rare Diseases Affect Patients as Well as Caregivers
Rare diseases affect more than the individual with the disease, said Dr. Margaret Bevans, during a Rare Disease Day session on caregiver resilience.
“They affect many others, including family members, and often parents, who serve as caregivers,” said Bevans, director of the Office of Research Nursing in NHLBI’s Office of the Clinical Director.
Caregivers are not paid and don’t receive any formal training. They give of themselves unconditionally to those they love to make a difference, she said.
They report higher levels of anxiety, depression, fatigue and loneliness. Oftentimes, they have to change their daily lives and restrict leisure activities. One study of parents with a child with a rare disease found they have a slightly lower quality of life compared to parents with healthy children.
“Caregiving is a chronic stressor,” said Bevans. “It is a complex and complicated experience that includes multiple competing priorities.”
There are many positive aspects of caregiving, such as finding meaning and being connected with people we love, said Bevans. However, “caring for another person, no matter how much you love them, is heavy.”
To build resilience, they must learn how to balance caring for another and one’s own emotional, spiritual and physical health.
“There are many professional interventions that your providers can refer you for, which can help support you and build resilience,” she said.
Additionally, there are everyday activities caregivers can do to cultivate balance, she said. They can, for example, find a trusted support person to share their feelings; improve communication with family, friends and providers; delegate responsibilities to others; exercise and pursue physical activity; get fresh air and explore nature; and make time to be mindful.
“As you prioritize your self-care, remember the acronym, REST—relax, eat healthy and stay active, sleep and take care of yourself,” Bevans concluded.
Find resources for caregivers on the Clinical Center’s website at: https://cc.nih.gov/wecare.