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This series of on-demand videos helps anyone seeking a clearer understanding of Fragile X syndrome and the Fragile X premutation.
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Through personal stories, this Keynote panel of speakers delves into the boundless potential and opportunities realized by those living with Fragile X. Learn how individuals and families have navigated challenges, uncovered strengths, and forged inspiring pathways and connections.
Experts discuss the unique health, wellness, puberty, and fertility considerations for girls and women with Fragile X syndrome (FXS), including how needs can vary widely across individuals. Panelists discuss guidance on puberty conversations, reproductive healthcare, emotional wellness, sleep, exercise, and supporting independence.
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Kelly Piacenti shared insights and resources to help families understand how a letter of intent can be vital in creating a comprehensive care plan.
Creating a plan is a meaningful and loving step toward securing the best possible future for your loved one. Learn of common pitfalls that can jeopardize long-term care and benefits for special needs individuals.
Navigating resources and programming for individuals living with Fragile X syndrome can be overwhelming. Eligibility for many available supports is based on a family’s income, assets, and resources. In 2014, due to the fierce advocacy efforts of many, including the Fragile X community, the Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act was passed. ABLE accounts are tax-advantaged savings, investment, and spending accounts for individuals with disabilities that can be established without affecting their eligibility for certain benefit programs.
During this webinar, Mark and John presented an overview of ABLE accounts, the benefits of having them, examples of qualified disability expenses, and how to find the most appropriate ABLE account provider for you. We concluded the webinar with an extensive Q & A session.
As a caregiver, it is completely understandable to feel overwhelmed when developing a future financial plan for your loved one living with Fragile X. The first thing to know is that making a plan takes time and it’s okay to feel unsure sometimes.
An introductory discussion on preparing a plan for the future to preserve your legacy and ensure that your loved ones are well cared for.
Learn about how to leave money and other assets for the benefit of a child with special needs without causing the child to lose important public benefits, including understanding the difference between a payback special needs trust and a third-party discretionary trust. ABLE accounts and benefits, such as SSI and Medicaid, are also discussed.
Derek Graham guides us in understanding if and when guardianship should be considered and the requirements.