The Children’s Tumor Foundation unveiled its 2024 portrait collection, “Make NF Research Visible.” Through captivating imagery and compelling narratives, this collection shines a spotlight on the critical importance of visibility on NF research, ultimately uniting us in the pursuit of progress and support for those touched by NF.
Hear why Emily Little, RN, BSN, says making NF research visible is important to her and her work.
I am the Nurse Coordinator at The Johns Hopkins Comprehensive Neurofibromatosis Center in Baltimore, Maryland. I work for and am inspired by Dr. Jaishri Blakeley, and our NF community at large.
Believing in the work I do as a nurse in The Johns Hopkins Comprehensive Neurofibromatosis (NF) Center is deeply rooted in the potential impact it has on the lives of those afflicted with this rare genetic disease. Here are some points why I believe in my work and the importance of research:
- Direct Impact on Patients: As a nurse, I have direct contact with individuals and families affected by neurofibromatosis. I witness firsthand the challenges they face on a daily basis, whether it’s managing symptoms, coping with emotional distress, or navigating the complexities of treatment options. My work directly contributes to improving their quality of life and providing them with the support they need.
- Advancements in Research: Neurofibromatosis is a complex condition with many facets that are still not fully understood. By being part of a center that conducts research, I contribute to expanding the knowledge base surrounding NF. Our center opens, writes, and designs clinical trials, and I can help patients navigate participation. This research is vital for developing new treatment strategies, improving diagnostic techniques, and ultimately finding a cure. Believing in my work means recognizing the critical role research plays in driving progress and innovation in the field of neurofibromatosis.
- Holistic Care Approach: Nursing in a specialized center like the neurofibromatosis center involves a holistic approach to patient care. This means addressing not only the physical symptoms of the disease but also the emotional, psychological, and social aspects. My belief in my work stems from the understanding that each patient is unique and deserves individualized care that considers all aspects of their well-being.
- Empowering Patients and Families: Living with a rare genetic disease like neurofibromatosis can be overwhelming for patients and their families. As a nurse, I have the opportunity to empower them by providing education, guidance, and support. By helping them understand their condition better and equipping them with the tools to manage it effectively, I contribute to improving their sense of control and autonomy.
- Community and Advocacy: Working in a specialized center also means being part of a broader community dedicated to supporting individuals with neurofibromatosis. My belief in my work extends beyond the walls of the clinic or research lab to advocating for awareness, resources, and policy changes that benefit NF patients on a larger scale. Being an advocate for my patients and their needs is an integral part of my role as a nurse.
Overall, my belief in the work that I do as a nurse in the neurofibromatosis center is grounded in the profound impact it has on the lives of patients and families affected by this rare genetic disease. From providing compassionate care to contributing to research efforts aimed at finding better treatments and ultimately a cure, I play a vital role in improving outcomes and enhancing the quality of life for those living with NF.
Making NF research visible is crucial for several reasons:
- Raising Awareness: Visibility of NF research helps to raise awareness about the condition itself. Many people may not be familiar with NF or its impact on individuals and families. Increased visibility can lead to more understanding and support from the general public.
- Advancing Treatment Options: Increased visibility can attract more researchers and funding to the field. This can lead to advancements in understanding the underlying mechanisms of NF and the development of better treatment options, including potential cures or therapies to manage symptoms more effectively.
- Supporting Patients and Families: Visibility of research provides hope and support to individuals living with NF and their families. Knowing that there are dedicated researchers working towards better treatments or a cure can offer encouragement and motivation to those affected by the condition.
- Fostering Collaboration: Visibility encourages collaboration among researchers, clinicians, patient advocacy groups, and pharmaceutical companies. Collaboration is essential for accelerating progress in NF research by pooling resources, sharing knowledge, and avoiding duplication of efforts.
- Policy and Funding Support: Increased visibility can also lead to more attention from policymakers and government funding agencies. This can result in policies and initiatives aimed at supporting NF research, such as increased funding opportunities or streamlined regulatory processes for clinical trials.
- Reducing Stigma: Visibility can help reduce the stigma associated with NF by promoting understanding and acceptance of the condition. This can lead to improved quality of life for individuals with NF and their families, as they may feel more supported and included in society.
Overall, making NF research visible is essential for driving progress toward better treatments, increased support for patients and families, and ultimately, finding a cure for this complex condition.
Click here to read the complete Make NF Research Visible collection.
