Hope for the Future – Adult Resources

Providing Resources for Families to Plan for the Future with Confidence

One of the most common questions we hear is, “What will happen to my loved one when I’m gone?” Who will care for them? Who will ensure their needs are met—keeping them healthy, safe, and surrounded by love? These concerns are endless, and while no one can replace all that you provide, we’re here to support you every step of the way. 

While we continue to work towards treatments for Fragile X—rest assured, we’re dedicated to making those breakthroughs happen—we also want to equip you with the resources needed to plan for the future with confidence. 

• We’re building a library filled with essential information on adult-specific topics, like caregiving, guardianship, financial planning tools and more, all to help you make informed decisions for your loved one’s future. 
• We’re advocating for more research funding to better understand aging and the long-term needs of individuals with Fragile X syndrome. 
• We’re facilitating clinical infrastructure that serves adults with FXS, including several FXCRC clinics who will see individuals with FXS through adulthood and clinicians who will partner with your local providers to ensure your loved one receives the best possible care. 
• We’re also committed to increasing the number of clinicians who are familiar with FXTAS, ensuring more clinics are prepared to serve individuals with this condition. 
• Additionally, we’re creating content for self-advocates, giving individuals with FXS the tools they need to share their experiences and educate others about Fragile X in a clear, impactful way. 

And as always, we will continue to offer educational resources for families and professionals, including webinars and other information that help everyone—whether self-advocates or loved ones—navigate the journey of aging with FXS. 

You can help ensure these resources remain available to all families impacted by Fragile X by giving today at fragilex.org/donate.

You can help make a difference!