activities · 4
what they do
direct service · 4
- Creating awareness materials featuring individuals with Rett syndrome Adaptive Social and Recreational ProgramsProduced an album and poster showcasing 107 women with Rett syndrome to raise awareness and highlight individual stories.
- Creating visibility for women with Rett syndrome Adaptive Social and Recreational ProgramsProduced an album and poster featuring 107 women with Rett syndrome to raise awareness and highlight individual stories within the community.
- Fundraising to support Rett syndrome research Themed Fundraising Events with Auctions & RafflesOrganizes and completes fundraising events to raise money for Rett syndrome research, doubling revenue in 2016 and distributing $60,000 in one year and $75,000 in another to the Rett Syndrome Research Trust to support gene therapy, genetic, RNA, and other research approaches.
- Fundraising to support Rett syndrome research Themed Fundraising Events with Auctions & RafflesOrganizes and completes fundraising events to generate financial support for Rett syndrome research, raising $60,000 in 2016 and $75,000 in subsequent years, with plans to directly fund research projects through larger-scale events.
strategies · 8
how they think
Theories of action extracted from this org's own source material. Click any to see the full field of orgs running the same approach.
- Accelerate research to cure Rett Syndrome research_fundingThe organization channels resources and support toward advancing medical research with the goal of finding a cure for Rett Syndrome, emphasizing funding acquisition and active participation in research initiatives.
- Acknowledging and Supporting the Mother-Daughter Bond family-centered_emotional_supportThe organization recognizes and emphasizes the profound and enduring emotional bond between mothers and daughters affected by Rett Syndrome as a central aspect of their lived experience, suggesting a focus on family-centered emotional support.
- Center emotional bonds and lived experience in care and support family-centered_emotional_supportPrioritizes the emotional connection between caregivers and individuals with Rett Syndrome—particularly the mother-daughter relationship—as foundational to understanding and supporting well-being.
- Challenging Preconceptions and Empowering Through Storytelling advocacy_through_awareness_and_storytellingThe organization challenges societal preconceptions about the abilities and intelligence of individuals with Rett Syndrome and highlights their resilience and strength as a source of hope and inspiration, thereby advocating for greater understanding and empowerment.
- Empower through storytelling and reframing narratives empowerment_through_storytellingUses personal stories to challenge misconceptions, affirm the intelligence and resilience of individuals with Rett Syndrome, and inspire hope by shifting public and familial perceptions.
- Eradicate Rett Syndrome through awareness and fundraising awareness_and_fundraisingCombines public awareness campaigns with fundraising efforts to drive progress toward eliminating Rett Syndrome, leveraging advocacy and financial mobilization as core mechanisms of change.
- Funding and Advancing Research for a Cure research_funding_and_advancementThe organization focuses on securing funding for researchers and actively participating in medical research to find a cure for Rett Syndrome, with the ultimate goal of eliminating the disease.
- Promote person-centered care practices person-centered careAdvocates for care models that prioritize the individual’s subjective experience, happiness, and well-being over societal norms, redefining what is considered "normal" in the context of Rett Syndrome.
named programs · 2
what they call their work
Awareness and Advocacy Campaign
Raises public awareness about Rett Syndrome through storytelling, educational content, and engagement with families and medical communities
Rett Syndrome Research Funding Initiative
Directs raised funds to support specific research projects focused on gene therapy, RNA approaches, and reactivation of the healthy MECP2 gene to cure Rett Syndrome
relationships · 2
who they work with
- Army of Us Partner — Published a guest post by the founder of Army of Us.
- Rett Syndrome Research Trust Partner — Financially supported specific work on gene therapy and other approaches to cure Rett Syndrome.