Michelle O’Dell’s advocacy journey began in 2010 when her son was diagnosed with Autism and later, Fragile X syndrome (FXS). In 2012, she co-founded the Highline Special Needs PTA to support families seeking appropriate public education for children with special needs. After moving closer to the State Capitol in Washington, she shifted her focus to state-level advocacy and, with local mentorship, launched a developmental disability coalition. This coalition empowers self-advocates and families to engage with policymakers and hold agencies accountable for the rights of individuals with developmental disabilities. Now in its fourth year, the coalition is actively advocating for legislative change. Along with her husband Jeff, and their sixteen-year-old son, Nathan, Michelle remains dedicated to raising awareness for rare diseases and advocating for policies that support them.
New Name, Same Commitment to Rare Diseases
The EveryLife Foundation for Rare Diseases has become The RARE Foundation! Read more about our new brand and how it unifies our advocacy work on behalf of the rare disease community.
