As we close the chapter on another year and step into a new one, I find myself reflecting deeply on what this community has weathered, built, and achieved together.
The Angelman syndrome journey is never simple. It is filled with extraordinary joy and profound love — and also with uncertainty, exhaustion, and waiting. As both the CEO of the Angelman Syndrome Foundation and as a parent of a child living with Angelman syndrome, I carry those realities with me every day. And as this year comes to an end, one thing is abundantly clear: this community continues to show up with courage, compassion, and an unwavering commitment to one another.
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A Year of Impact: Measured in People, Not Just Numbers
This year, ASF supported thousands of families across the globe through education, resources, direct assistance, clinics, and community connection. We invested in critical research and clinical care, ensuring that progress continues to move forward thoughtfully, inclusively, and with families at the center. We strengthened our Clinic Network, helping more individuals with Angelman syndrome access expert, coordinated care closer to home.
We also continued to expand programs that recognize a simple but powerful truth: when families are supported, individuals with Angelman syndrome thrive. From caregiver resources to educational tools, from respite-focused efforts to mental health supports, we worked to meet families where they are — not just in moments of crisis, but across the lifespan. Every statistic we share represents a real child, a real adult, a real caregiver. Behind every number is a family navigating decisions, celebrating milestones, and pushing forward even on the hardest days.
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Advocacy: Turning Lived Experience into Lasting Change
This year also reinforced how essential advocacy is to the future of the Angelman community. Families should not have to navigate systems that were never designed with rare diseases in mind — whether that’s access to care, Medicaid and long-term supports, education, adult services, or research participation. The community continued to elevate the voices of individuals with Angelman syndrome and their families, working alongside our partners at FAST, clinicians, policymakers, and advocates to push for systems that are more inclusive, informed, and responsive.
Advocacy is not just about legislation or policy — it is about visibility, representation, and dignity. It is about ensuring that Angelman syndrome is understood accurately and compassionately. It is about pushing for a future where families are not left to figure everything out on their own.
And it is about ensuring that adults living with Angelman syndrome are not forgotten.
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Looking Ahead: A Community Building the Future Together
As we look toward the year ahead — and beyond — there is so much to be excited about.
We are already deeply engaged in planning for the 2026 ASF Family Conference, which will bring our community together to learn, connect, and move forward together. This conference will reflect the evolving needs of our community, with an increased focus on adulthood, caregiving, mental health, and long-term supports, alongside the latest in research and clinical care. At the same time, we remain steadfast in our commitment to funding research — research that moves us closer to life-changing treatments, and research that directly improves quality of life today. This includes continued investment in studies focused on the symptoms our loved ones with Angelman syndrome face every day, such as seizures, movement disorders, communication, mobility, anxiety, and behavior. Both paths matter. Families deserve hope for the future and meaningful support in the present.
We are also looking forward to launching additional clinics, including continued international expansion, so that more families — regardless of where they live — can access specialized, expert care. Equitable access to care remains a cornerstone of our mission.
In the coming year, ASF will continue to expand services for adults living with Angelman syndrome, recognizing that childhood support alone is not enough. Adulthood brings new challenges, new questions, and new opportunities — and our community deserves resources, guidance, and advocacy that span the entire lifespan.
We are equally committed to growing our caregiving support programs. Caregivers are the backbone of this community, and supporting them is not optional — it is essential. When caregivers are supported, individuals with Angelman syndrome are supported too.
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Holding Space for Hope
Perhaps most importantly, we move forward with hope. Hope grounded in scientific progress and collaboration. Hope fueled by the dedication of researchers, clinicians, and industry partners working toward meaningful treatments. Hope strengthened by families who continue to show up for one another with honesty and compassion.
Treatments cannot come soon enough — and we know the waiting is hard. But the momentum is real, and it is because of this community. Progress happens when families, researchers, clinicians, advocates, and supporters move forward together.
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With Gratitude
To every family who trusted ASF this year — thank you.
To every caregiver who showed up on the hardest days — thank you.
To every donor, volunteer, advocate, clinician, and researcher — thank you.
It is an honor to walk alongside you, to learn from you, and to fight for a better future together.
As we step into the new year, may we continue to lead with compassion, advocate with purpose, and hold tightly to hope.
