The DFX Legacy Fund
To honor the legacy of our Co-Founder, Mouse, and to assure our sustainability in the Fragile X community for years to come, we’ve created The DFX Legacy Fund. We are asking for your participation in honoring Mouse with a donation to this special fund.
The DFX Legacy Fund will provide the means for Mouse and Tracy to bring to fruition several writing projects that will ensure the broader FX community has sustainable access to our years of collected experience and wisdom.
Three specific writing projects have been outlined:
- A long overdue book on the day–to-day strategies we use in working with children and families affected by Fragile X Syndrome (FXS).
- Refinement of the FX-Max, a diagnostic specific tool to help parents, teachers, therapists, and adult programs better plan for their clients with FXS.
- FX Stories-from-the-Heart Project: finally, you may have heard of StoryCorps© on National Public Radio. StoryCorps© features “Stories of the human heart. A candid, unscripted conversation between two people about what’s really important in life: love, loss, family, friendship.” In our unique role in the FX community, we have come to know families and professionals in a profoundly personal way. We have witnessed stories of deep humanity, of living life with FXS and grappling with trying to understand all that it entails. These stories of struggle and triumph inspire empathy and a deeper commitment to our collective cause. Equally relevant to families, researchers, teachers, and clinicians, these stories will improve the state of care through the kernels of truth they hold. We envision modeling from StoryCorps a set of FX specific stories that will create a reference for us all. This FX Stories-from-the-Heart Project will become a vehicle for gathering the real stories that not only reflect the deepest needs, but also sharing the essence of our common humanity, through lessons we have been privileged to learn from walking along side all of you. These stories are a source of information that speak in a way that only individual stories can. This ‘heart project’ will follow the journey of families with FXS – their passion, love, acceptance, and so many other emotions we have witnessed over 30 years. Your support of The DFX Legacy Fund will allow us to gather, record and share FXS with the world.
The DFX Legacy Fund at DFX will be an on-going means of supporting the unique, dedicated FX work provided by DFX that is so essential to the FX community. The fund will also provide scholarships for consultation and training for families who might not otherwise be able to afford the expertise at DFX. This has long been a goal of DFX and we are honored that The DFX Legacy Fund can be the mechanism for greater reach. An anonymous donor has generously seeded this part of the fund to create a scholarship fund within The FX Legacy Fund. Your donation to The DFX Legacy Fund can include a special designation for scholarships for on-going access to expertise in Fragile X Syndrome that is hard to find elsewhere.
Our goal is to raise $75,000 to fund the above initiatives. We need your help to sustain our work in the Fragile X Community. Please help us to honor Mouse’s legacy by making a donation today to The DFX Legacy Fund in her name. For our dear, one and only Mouse!