Roy, Jamini. (n.d.) Untitled Mother and Child.
Private Collection.
Imagine loving, protecting and dreaming for your beautiful child… a child who has a chronic medical condition. The path is lonely and fraught with danger and obstacles in healthcare and education. Why is it so difficult and where are the answers?
We understand. We care. We are parents who live in these shoes. We have dedicated ourselves to uncovering the problem and discovering what changes are needed to help our children live the lives they deserve. Our families have experienced the unimaginable. We are living the impossible.
Outside the Box
PPC is a novel parent-driven think tank that studies policy, systems and society for millennials and Gen Z who grew up with childhood chronic conditions.
A Mother's Love
Our non-profit started with one mother’s experience as a physician in policy who struggled to keep her own daughter safe in the health system, in school and in society.
Research
This physician-mother left the profession she loved to study health policy. Her formal research showed that other physician-parents of children with different conditions had to intervene to manage their child’s care to prevent morbidity or mortality. The group unanimously agreed on the need for a national organization to protect all families of children with chronic conditions: this is why Physician-Parent Caregivers was created.
Analysis
We are grateful to the numerous individuals and organizations who have volunteered and partnered with us over the past two decades to analyze the policies and systems of care that affect young people with chronic conditions and their families.
Integrity
We are incredibly proud of the collective passion that fueled our work. It was not easy but we know that our work is pure and authentic. The only people we were accountable to are young people with chronic conditions and their families. We have been able to be nimble and follow the yellow brick road to discover the root of the problems.
Discovery
We found that this population is invisible and neglected. They were not expected to survive conditions like cystic fibrosis, sickle cell disease or congenital heart disease. When these young people graduate from pediatrics and high school, they enter an adult world that is unprepared to receive them. They need young adult medicine and accommodations and supports to succeed in higher education and the workplace.
Join the 'Wave'
Now that we know the root cause(s), we are launching the Invisible Wave Movement to change society and policy to ensure young adults with chronic conditions are fully included and supported so they too have a chance to participate in the American Dream.
Join the ‘Wave’ and make a difference in the lives of millions of young adults and their families.
Policy Change
PPC introduced groundbreaking higher education legislation for students with chronic conditions in Maryland that led to a landmark report with 17 recommendations. Colleges acknowledge that these students account for top 1 or 2 groups that access disability support services, but they lack the necessary accommodations and supports to help them succeed.
PPC worked with Senator Chris Van Hollen to urge CDC to include young adults with chronic conditions in their assessments and to prioritize them for vaccinations. PPC also worked with the Senator to include children and young adults in his Diagnostic Errors bill.