NIH Champions and Allies of Disability Awardees
As the National Institutes of Health (NIH) recognizes October as National Disability Employment Awareness Month (NDEAM), we also want to honor those who encourage others by their example and demonstrate unconditional commitment, compassion, and understanding towards the disability community, as well as those who bring more of themselves into the workplace to make it more inclusive.
Disability Ally Award
Program Analyst, Office of Acquisition and Logistics Management (OALM), Contract Data Management Program (CDMP)
In March of 2007, Dee joined OALM as a Contractor with KellyServices, Inc. She transitioned into the NIH Pathways program. Upon receiving her Bachelor of Science Degree in Project Management from the Colorado Technical University, she became a Program Analyst within CDMP. During her internship, she was presented with the opportunity to become the Section 508 Help Point of Contact (HPOC) for OALM. She quickly embraced Section 508 and became proficient in applying and instructing users on applying the Section 508 Standards for creating accessible electronic documents. In November of 2009, Dee partnered with the Trans-OM Section 508 program, where she instructed the Section 508 Interns, yearly, until June 2020. In May of 2015, Dee was approached by the Center for Information Technology (CIT) to instruct users, via in-person and WebEx, Section 508 Standards for electronic documents. Presently, Dee instructs quarterly sessions for Creating Accessible Microsoft Office Documents.
On a personal note: Accessible documents help the document creator become proficient in the software programs they are using. And more importantly, it helps those who require the assistance of assistive technology to obtain information otherwise inaccessible to them. Accessible documents benefit everyone!
Through her efforts for some years now, she has created and developed learning material which she shares on a SharePoint site she and her division has opened to all NIH. While this site focuses on the accessible information and communication technology (ICT) community of practice, it supports persons with disabilities. Rather than have this be a single IC access or effort, though her efforts, the process has been open to all of NIH to use and contribute. Her thought process is “Why reinvent the Wheel” –both for developing her own training material and for what she shares with NIH colleagues. She continues to develop and refine training material, which, in turn, she shares with NIH staff responsible for ensuring that ICT is accessible to persons with disabilities. In summation, Dee Dansby has given the NIH ICT accessibility community a one-stop “shopping” center to have staff utilized to obtain better Section 508-compliance and accessibility-Conformance in their IC’s Information and Communication Technology products and services.
Diane L. Damiano, PT, PhD, FAPT
Senior Investigator, National Institutes of Health, Chief, Functional and Applied Biomechanics Section, Rehabilitation Medicine
Dr. Damiano’s research focuses on the design and investigation of activity-based rehabilitation programs and devices to promote optimal motor functioning and enhance muscle and neural plasticity in cerebral palsy. Her laboratory also has pioneered the use of mobile brain imaging technologies to investigate motor development and function in infants and children with and without cerebral palsy. She has served as President of the American Academy for Cerebral Palsy and Developmental Medicine and the Gait and Clinical Movement Analysis Society. She is on the Scientific Advisory Board of the Cerebral Palsy Foundation, and was first appointed to that position nearly 20 years ago by Dr. Murray Goldstein who was a previous Director of NINDS who headed that Foundation for many years after his retirement from NIH.
The focus of Dr. Damiano’s research has focused on understanding how brain dysfunction influences motor impairments and thereby to devise more effective interventions. Her seminal research in strength training for children with cerebral palsy debunked long-held myths related to strength training in patients with spasticity. This research leads to changes in rehabilitation interventions for patients and improved outcomes. Dr. Damiano has been a life-long advocate of children with disabilities, currently serving on a UNICEF disability committee. She was the first Physical Therapist to be elected as President of the American Academy of Cerebral Palsy and Developmental Medicine. Dr. Damiano has also mentored many therapists and scientists in training. Based on her own Science and the work of her many Trainees who are now scientists in their own right Dr. Damiano has had a profound influence on understanding motor disabilities, treatment outcomes, and the lives of persons with disabilities.
Federal Service Desk Manager, National Institute of Arthritis and Musculoskeletal and Skin Diseases
Kevin Simmons has worked in the Information Technology Industry for over twenty-five years providing quality IT customer service support as a contractor and federal employee. He has previously held positions at Canon, Nextel, Sprint, Verizon, NASA, and Washington DC Metro. In 2012, he joined Digicon Corporation as a Network Operations Manager and provided VIP IT support to its CEO before joining NIAMS as a contractor in 2014.
As an IT Service Desk Manager at NIAMS, Kevin collaborates with multiple NIH IC (Institutes & Centers) on various cutting-edge, large-scale IT Projects to provide NIH and NIAMS partners with industry-leading IT Support. After three years as a contractor, he was asked to join NIAMS as a Federal IT Customer Support Specialist. Currently,Kevin leads the NIAMS Service Desk researching, evaluating, and providing feedback to top-level government management on improving IT Support while using Relationship Management techniques to improve stakeholder engagement with NIAMS Partners.
While working for NIAMS, Kevin received his Project Management Professional (PMP) Certification, various government Program Management Certifications, and several Government Contract Management certifications. Additionally, he was accepted to Harvard University’s Division of Continuing Education Program in 2018 to complete his undergraduate and graduate degrees.
Kevin enjoys working with people, and if someone were to use one word to describe his personality, that word would be “upbeat.” He uses his cheerful disposition to inspire others to be their best and strive, continually, to improve. NIAMS has allowed him to progress his career by doing what he loves best, serving others.
Kevin assumes a key role in the Project Search Program. In this program, young adults with disabilities are provided with real, on-the-job work experiences in areas such as IT, food service, clerical, and laboratory work. Participants spend approximately 5hours at the work site each day and gain tangible work experience that could lead to a job. Kevin actively served as the on-site supervisor for three young men during their 10-week rotation through the Branch (separate times). He excelled as a coach, advocate, and ambassador and created many good memories and tangible experiences for the participants.
Kevin mentored the interns on IT Operations and employment etiquette, seeking to match the skills of the individuals with work activities to help them find gainful employment. He spent time with them to really build a relationship and let them know he cared. During the parent meeting, it was obvious to both the parents and his supervisor how much he cared and advocated for them. All of the parents wanted to meet this “Kevin” that their child always spoke of. Finally, Kevin collaborated with Project Searches liaisons to improve the quality of work for the interns by giving guidance and feedback regarding assigned tasks.
Disability Champion Award
Nancy O’Hanlon, J.D.
Senior Supervisory Ethics Specialist, National Cancer Institute
Nancy O’Hanlon is a Supervisory Ethics Specialist with the NCI Ethics Office. She was born in Taiwan and grew up in Texas. She graduated from the University of Texas in Austin with both a B.S. in Chemistry and a J.D. In college, one of Nancy’s best friends convinced her to try living and working in London for a summer. That summer is still one of Nancy’s best memories, and she credits that summer for giving her the belief that the world could be her oyster. Nancy then moved to the DC area after college. After all, accessibility was going to be a breeze in comparison to London. She plastered her resume everywhere and was lucky enough to be noticed by a hiring official at the Defense Intelligence Agency (DIA). This led to 14 years at the Pentagon as an Assistant General Counsel for DIA. She left the Pentagon in 2006 for a position at NHLBI and then left NHLBI in 2012 for a position at NCI. If you ask Nancy what she loves most about her job, she will always tell you –THE PEOPLE! Nancy believes that she has been extremely fortunate in life and is most grateful for all the wonderful people who are or have been a part of her life.
Nancy has been directly involved in providing opportunities for those with physical and intellectual disabilities. She has actively found and recruited numerous qualified candidates through engagement with outside organizations and resources. While at the NCI, she has been responsible for the placement and mentoring of trainees and employees with a wide range of disabilities, including those related to intellectual, mobility and vision. As an employee with a disability, she set’s an example for everybody through her dedication to work, can-do attitude, high quality of work, legal expertise, reliability, and being a role model for all.
Section 508 Coordinator, National Cancer Institute
Gary advises NCI staff regarding Information and Communication Technology’s (ICT) accessibility and its conformance with Section 508 standards. He supports NCI staff in making its wide array of digital contents more accessible for employees and for members of the public. Prior to joining NCI in March 2020, he similarly functioned as NIH’s Section 508 and accessible ICT guru, based in NIH’s Office on Equity, Diversity, and Inclusion (2001 –2008) and the Office of the Chief Information Officer (2008 -2020).
Gary joined the NIH as a Sign Language Interpreter, in 1993. Throughout the 1990s, he coordinated NIH interpreting services and he trained ASL interpreters across the US to facilitate communication in healthcare settings. He was also actively involved with HHS’s Shared Neutrals, mediating conflict resolution in agencies across the Federal government, with an emphasis on reasonable accommodations.
In 2000, he began focusing on Section 508 and the accessibility of Information and Communication Technology. Gary sees the role of accessible technology as a means of enabling employees with disabilities to perform to their greatest potential and as part of an institutional responsibility and strategy to address healthcare disparities experienced by persons with disabilities. Implementing Section 508 of the Rehabilitation Act is not an end in itself but a means to address barriers to employment and to better healthcare outcomes.
Outside of the NIH, he finds great joy spending time with his 3-year-old granddaughter, seeks dead people in family history research, and loves a good film noir or classic, black-and-white horror flic.
Gary has long been an advocate, steward, and source of information around disability and inclusion offered across the NIH and beyond. Along with that outreach, he has offered and led dozens of classes on accessibility using IT, on assistive technology, and on accessibility policy each year, and for many years, through both the CIT and NIH Training programs. For many, Gary is the expert and go-to person on Section 508-related policy and practices at the NIH, But Gary is more widely experience, with knowledge and experience with other Federal legislation and policy (ADA, Section 501, Section 504, etc. and offers to guide and facilitate access to accessibility resources to all who come his way. Gary served as one of the facilitators at the Accessibility Lab, which he helped to introduce. Gary engages on NIH accessibility challenges with compassion--and brings not only his own skills and experience but he also effectively reaches out to the broader Federal and nationwide communities for input and solutions. He is truly a champion for the community here at the NIH, but also for the broader community as well.
Disability Ally Group Award
DS-Connect® Registry Team
National Institute of Child Health and Human Development (NICHD)
The Down syndrome registry or DS-Connect® was launched by NIH with help from the Down Syndrome Consortium, a group of national and international organizations that focus on and support the Down syndrome community. The team from the Eunice Kennedy Shriver National Institute of Child Health and Human Development nominated for this award have engaged with the community of individuals with Down syndrome (DS), their families, and care providers to ensure the registry meets their needs. Through attendance at 10-15 conferences and meetings a year, many of which are meetings of the advocacy community, and also through webinars, newsletters, podcasts, and social media, the team regularly engages with individuals with DS and their supporting community. The registry aims to answer questions about DS and the health of those who have it. The registry facilitates contacts and information sharing among people with Down syndrome and their family members, researchers, and parent and support groups safely and confidentially. It is a central, confidential, and secure platform for collecting health care information that will improve the quality of health for people with Down syndrome. It also provides a resource for people with DS and their families and care partners, including the following capabilities: 1) connecting them with the larger DS community, 2) providing information on DS, 3) providing yearly updates about the medical care that is recommended at the person’s age, 4) sending information about new findings and treatments for DS, 5) providing a list of health care providers who work with people with DS, 6) allowing participants and families to organize medical information and history all in one place and share it with their doctors, 7) sharing data from the group as a whole on specific responses or answers that are of interest to the individual, and 8) alerting them if they are eligible for new research studies.
Melissa Parisi, M.D., Ph.D.
Chief, Intellectual and Developmental Disabilities Branch, NICHD
Dr. Parisi earned an M.D. degree and Ph.D. degree in Developmental Biology from Stanford University, followed by pediatrics residency and fellowship training in medical genetics at the University of Washington. Prior to moving to NIH in 2008, she was an assistant professor in the Department of Pediatrics at the University of Washington and Seattle Children’s Hospital, where she was a clinical geneticist and researcher in the field of human hindbrain malformations and ciliary disorders. At NICHD, she oversees the Intellectual and Developmental Disabilities Research Centers program. She also chairs the Down Syndrome Consortium, a public-private partnership to facilitate exchange of information and collaborations to promote research in Down syndrome across the community. Through this Consortium, she has led efforts to create DS-Connect®: The Down Syndrome Registry, an online, secure database with demographic and health information about individuals with Down syndrome designed to facilitate research and connect families with research opportunities and resources about Down syndrome. In addition, she has provided leadership to the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project, a trans-NIH initiative to address critical health and quality-of-life needs for individuals with Down syndrome launched in 2018. Dr. Parisi is honored to work with so many talented NIH colleagues and dedicated families on these initiatives and is committed to the inclusion of those with intellectual and developmental disabilities in basic, clinical, and translational research that will improve their lives.
Lisa Kaeser, J.D.
Director, Office of Legislation and Public Policy, NICHD
Lisa works as a liaison between the NICHD’s leadership and its many constituencies, which include Congress, the scientific and research advocacy communities, and the public, including the organizations that comprise the Down Syndrome Consortium, of which she is the Executive Secretary. She also was one of two primary authors of DS Directions: the NIH Research Plan on Down Syndrome, published in 2014, and is currently working on a 2021 update. Prior to joining the NICHD over 20 years ago, Ms. Kaeser worked for over a decade in women’s health research and policy issues at The Alan Guttmacher Institute, and before that for three years on Capitol Hill as a legislative assistant to Rep. Jim Moody (D-WI). In her other life, she has been a health counselor at the Washington Free Clinic, a health education teacher for eighth grade students, and is a certified parent educator. She has a law degree from Vermont Law School and did her undergraduate work at Dartmouth College.
Sujata Bardhan, Ph.D
Health Scientist Administrator, Intellectual and Developmental Disabilities Branch, NICHD
Dr. Sujata Bardhan obtained her Ph. D. in Chemistry from Boston University and postdoctoral training in the Drug Discovery and Medicinal Chemistry unit at Wyeth Pharmaceuticals. She is currently a Health Scientist Administrator in the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health, Bethesda, MD. She joined NICHD in April 2013. She has been involved in the development of “DS-Connect®: The Down Syndrome Registry,” and serves as the Registry Coordinator. The Registry is an online, confidential database with demographic and basic health information from individuals with Down syndrome to facilitate research. She also manages other Down syndrome related projects including activities for outreach to underrepresented minorities, activities of the INCLUDE Project and mHealth topics related to Down syndrome and IDDs such as technology and assistive devices, telemedicine.
Information Security Systems Officer, NICHD
Mr. Callwood ensures that infrastructure protection operational activities are completed in a manner consistent with the standards set by NICHD leadership and performs proactive security services for the NICHD network infrastructure and computer systems ensuring Confidentiality, Integrity, and Availability (CIA) to improve the NICHD’s security posture. Mr. Callwood provides and directs services that impact the NICHD community and provides guidance to special projects that includes policy review, product implementation, and determines standards and requirements. Mr. Callwood works with NICHD Contracting Officers and Contracting Officer Representative to ensure that contractor developed and contractor managed systems are FISMA compliant.
Christina Stile, ELS, MAPW
Deputy Director, Communications, NICHD
Ms. Stile started at NICHD in 1999 as a writer/editor, later became the publications director, and then a public health analyst. She won the first HHS Secretary’s Plain Language Award for Adventures in Parenting in 2001, recognition she credits to her time studying under plain English movement founder, Dr. Erwin Steinberg, at Carnegie Mellon University (CMU). Ms. Stile graduated with a bachelor of science degree in biology from John Carroll University in 1994, received her Editor in the Life Sciences certification in 2000, and completed the master of arts in professional writing program at CMU in 1999. She lives in Rockville, Maryland, with her husband and two very spoiled cats.
Debbie Jae, M.S.
Phenomics Team Lead, NICHD
Debbie Jae, M.S. has been honored to be a part of DS-Connect since 2014. From working with researchers across the country, to hanging out with people with Down syndrome at national conferences, to building tools to connect people to clinical trials, to supporting clinicians in helping their patients get DS-Connected, to meeting the moms, dads, brothers, sisters and all the loving people who have lives enriched by people with Down syndrome, this role with DS-Connect has given Debbie the wonderful experience of working with so many people dedicated to making each person’s life healthy and happy. Debbie feels fortunate to rely on a devoted team of software engineers and testers at Invitae, who work tirelessly to create and test the tools that make DS-Connect a powerful resource for people with Down syndrome and their families and to collaborate with the team at NICHD, including Dr. Melissa Parisi, Dr. Sujata Bardhan, and Lisa Kaeser, J.D., to help bring their vision of the future of research in Down syndrome, and thus the health and well being of all people with Down syndrome, into reality today.
Senior Technical Implementation Engineer, Phenomics Team, NICHD
Alberto Carrasco is the Senior Technical Implementation Engineer in Invitae Corporation. He started his career with the United States Army as a Signal Support Specialist where he served in the United Nations Command Security Battalion-Joint Security Area which secures the Joint Security Area between North and South Korea. He then worked at Isensix, Inc. as a Linux Systems Administrator where he installed and supported Guardian, a versatile and innovative environmental monitoring system, at clinical, research and healthcare facilities such as Johns Hopkins University, Mayo Clinic, Kaiser Permanente and Cedars-Sinai Hospital.
In 2013, he started working on the development of DS-Connect to help people with Down syndrome to connect with clinicians, researchers and have access to de-identified aggregate data related to Down syndrome. As the Senior Technical Implementation Engineer, Alberto works with the team on deploying new features and assist with improving the users experience on the DS-Connect Registry. Helping others has always been the focus and mission of Alberto and it has been an honor for him to work with the National Institutes of Health on the DS-Connect Registry.
Senior System Architect and Technical Team Lead, Phenomics Team, NICHD
Mr. Rhode has spent the last fifteen years of his career focused on implementing open-source technology tools to support research and patient advocacy efforts.
He is responsible for the design and development of the Invitae Patient Insights Network registry platform. This platform has been used by research and advocacy organizations to collect data for research with a focus on patient provided outcomes. He is a firm believer in the importance of patients “owning” their data and having a voice in its use. This platform was originally developed at PatientCrossroads which Mr. Rhode co-founded in 2004. PatientCrossroads was acquired by Invitae in 2017.
At Invitae, Mr. Rhode is leading a group of developers and implementation engineers that are continuing the work PatientCrossroads started which includes supporting the DS-Connect registry that has been supporting the Down syndrome community since 2014. Working on the DS-Connect registry with Dr Melissa Parisi, Dr Sujata Bardhan, Lisa Kaeser JD, and the broader Down syndrome community to connect with patients and amplify their voice in research continues to excite and challenge Mr. Rhode.