- Amplify the collective patient voice in the Still’s disease community by bridging the SJIA and AOSD continuum.
- Arm patients with the science behind Still’s disease to further engage patients and providers in shared medicine.
- Provide an online resource hub for both Still’s disease community.
- Engage the adult rheumatology practice community with their pediatric counterparts.
Shalla Newton, MSN, RN, NE-BC
Shalla is a cross-functional leader with a nursing background specializing in rare and orphan diseases. Her therapeutic areas of expertise are autoimmune, autoinflammatory, immune-mediated, neurology, and genetic diseases. Shalla’s tenure spans over 20 years as a leader and conduit among biopharma, biotech, nonprofit advocacy organizations, and global government affairs. Her leadership roles have been in both direct patient care & disease education, patient and organizational advocacy, patient & community engagement/outreach, patient access, market/channel access, medical affairs, research, global policy, medical communications, and government/public affairs.
Shalla’s passion in rare, orphan, and complex diseases emerged long before she had to quarterback her own complex care with two rare diseases. Years prior to her own rare diagnostic journey, Shalla was advocating for her pediatric patients and their families with rare/orphan and complex diseases in direct patient care. She shares her passion and expertise in navigating a healthcare system never designed to treat rare and complex patients (families). She recognizes advocacy surpasses the patient voice and never remains static, but is rather strategic in implementation and sustainability.
From 2018-2020, Shalla left her leadership role with a rare disease biopharma company to focus fulltime on the completion of her graduate nursing work with Johns Hopkins University. During her graduate work, she built an extensive tenure of accomplishments, such as publications with top experts/opinion leaders, consulted with clinical-stage & commercial rare disease companies curating dossiers and FDA/NIH grant proposals, presented nationally at rare disease conferences, and co-founded Still’s Disease, the 411 allowing for partnerships with the top advocacy organizations and being a resource for patients.
In addition to her roles as co-founder, author and management of content, Shalla directs key thought leader and stakeholder engagements. She also curates Still’s Disease, the 411 content for clinical organizations as a licensed nurse. See more of Shalla’s story here
David is an AOSD patient with a burning interest in science-based medicine, immunology, and the pathophysiology of autoinflammatory diseases. He is currently working on his Masters of Public Health emphasizing Epidemiology which he hopes to use to study the epidemiology of autoinflammatory diseases.
In addition to co-writing content, David leads website design, content management, social media, and makes all the IT magic happen behind the scenes. See more of David’s story here.