CurePSP’s Diversity, Equity and Inclusion Promise
Prime-of-life neurodegenerative diseases affect all people — across nationalities, races, sexual orientations, gender identities, and creeds. At CurePSP, we consider it our mission to serve every family affected by prime-of-life neurodegenerative diseases. CurePSP does and will not tolerate racism, bigotry or discrimination of any kind. As an organization, we embrace diversity, recognize injustice, and strongly believe that compassion and respect for humanity are at the core of our mission.
We recognize the inequities that put additional and disproportionate burdens on some individuals and families already facing the extraordinary hardship of living with neurodegenerative disease. Underserved groups include Black, Latinx, and other communities of color, Indigenous peoples, the Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ) community, and economically disadvantaged populations.
Disproportionate challenges experienced by these communities include:
- Barriers to timely diagnosis and high-quality, comprehensive medical care
- Insufficient access to educational information, support resources, and tools to help navigate the disease journey
- Under-representation in the medical research that is advancing new treatments and laying the groundwork toward a cure
CurePSP acknowledges the urgent responsibility to address these disparities and to improve diversity, equity and inclusion through our mission of supporting those living with prime-of-life neurodegeneration.
As an organization, we commit to:
- Improve access to proper diagnosis, care, and resources to better serve all patients and families by expanding our Centers of Care network, training to allied health professionals, and outreach to patients and families, especially in more rural and underserved areas
- Begin a dialogue with stakeholders to understand how prime-of-life neurodegeneration affects populations differently
- Strengthen our outreach to underserved communities to provide information about CurePSP programming and services
- Increase the diversity of representation in our website, resources, and stories we share
- Tailor messaging and services to address the distinct need and cultural nuances of the different communities we serve
- Encourage participation in clinical trials and other medical research that is representative of the population as a whole
- Increase awareness of our research funding opportunities to reach a broad base of scientists and institutions
- Revisit proposal review practices to identify and address unintentional bias in awarding CurePSP research grants
- Participate in efforts to draw underrepresented groups into scientific fields
Who We Are:
- Strive to increase and maintain diversity among our staff, volunteers, board members, advisors, and invited speakers
- Institute training and educational programs that foster a culture of learning and support
We approach these commitments to diversity, equity, and inclusion wholeheartedly, intentionally, and humbly, and aware that we are early on in this journey. We ask our community members to support us and to hold us accountable as we work to achieve these objectives. Together, we will take one step closer to realizing a fairer, more compassionate world free of prime-of-life neurodegenerative disease.