Meet the advocates of Handbasket Haven
Discover the dedicated individuals whose lived experiences and unwavering commitment form the backbone of our mission to support rare disease patients and families.
Laura Wylesky: The trailblazer
Laura Wylesky is a rare disease advocate, investigative researcher, and dedicated caregiver with nearly four decades of experience. As a former NORD Missouri State Ambassador and a graduate of the Global Genes RARE Compassion Program, her deep understanding of the rare disease landscape is unparalleled. Laura is also a named participant in published peer-reviewed medical research and the author of *Fireborn*, embodying a profound commitment to advancing understanding and support for those with rare conditions. She built frameworks where none existed, even developing and publishing a caregiver-led intervention protocol and formal research paper for a genetic combination previously undocumented in medical literature.
Jaden: Living proof of possibilities
At 20 years old, Jaden lives with three confirmed rare genetic abnormalities that interact across every system in his body simultaneously. His journey is powerful evidence that informed integrative care produces outcomes the standard medical system often deems impossible. Jaden's survival is the ultimate proof of concept for Handbasket Haven's advocacy, demonstrating the profound impact of the right support and unwavering dedication.
Julie Sparkman: Champion for caregivers
Julie Sparkman is a Washington State home care aide, Union bargaining team representative, and a longtime advocate for caregivers and vulnerable populations. With over a decade of collaborative advocacy work alongside Laura, Julie tirelessly fights for caregiver rights and Medicaid protections at both the state and federal levels. Her dedication ensures that those providing essential care receive the support and recognition they deserve, reinforcing the community-driven mission of Handbasket Haven.
Lived experience is expertise.
These advocates, Laura, Julie, and Jaden, exemplify the core of Handbasket Haven’s mission: neighbors helping neighbors is the only system that truly works when others fail. They investigate cases, fight for children and families navigating complex systems, and build the grassroots infrastructure that connects rare disease patients to vital resources, legislators, and each other. Their combined efforts, highlighted by Jaden's survival against all odds, demonstrate that a caregiver who built a medical framework, a labor advocate who fought for the hardest workers, and a young man whose survival is proof of life-changing support, embody Handbasket Haven's commitment to creating a haven for vulnerable communities.