From Diagnosis to Advocacy: Michelle Proctor-Simms' Journey with OCNDS
By Aryana Adeline Valle-Portela
When Michelle’s daughter, Claire, was diagnosed with OCNDS at the age of 10 through the Care for Rare research study, it was both a relief and a challenge. After years of uncertainty, the diagnosis provided answers, but it also introduced new obstacles—managing behavioral issues, finding effective treatments, and adjusting to a new reality. However, Michelle found solace and strength in the CSNK2A1 Foundation, where she connected with other families navigating similar experiences.
Motivated by the support and knowledge she gained, Michelle became an active member of the foundation. She joined the Parent Advisory Board in 2020, just two years after Claire’s diagnosis, eager to give back to the community that had been a lifeline for her own family. Her involvement quickly deepened as she embraced opportunities to support other parents, share resources, and foster a sense of belonging for those new to the OCNDS journey.
As the foundation’s regional ambassador for Canada, Michelle has played a key role in uniting families across the country. She has helped parents navigate the complexities of an OCNDS diagnosis, organized family gatherings, and contributed to strengthening the foundation’s mission of building a robust, informed community. Michelle treasures the close relationships she’s developed with other parents, whom she describes as compassionate, resilient, and inspiring.
For Michelle, the CSNK2A1 Foundation represents more than just a support network; it’s a pioneering movement driving change and advancing research. She remains motivated by the opportunity to contribute to something greater, ensuring that new families feel the same sense of hope and community she experienced. Through her efforts, Michelle has helped the foundation grow while empowering others to face the challenges of OCNDS with strength and optimism.
Looking ahead, Michelle dreams of a future with better management strategies for OCNDS symptoms and an expanded natural history study to inform care standards. She is committed to fostering a supportive environment for families navigating this rare condition, ensuring they never feel alone on their journey.
Through her dedication, Michelle has not only helped shape the foundation’s impact but has also strengthened the bonds within the OCNDS community. Her journey from seeking support to leading and advocating for others is a testament to the power of connection, resilience, and hope.