AbbyStrong Fights NPC

08/30/2026

There is a lot happening behind the scenes at ASFNPC. We are working on developing our organization to be stronger than ever as we approach .

Our relaunch this September will bring a refreshed look, clearer resources for families, and new ways for you to get involved and support the kids and families we serve. We can’t wait to share it with you.

Stay tuned — big things are coming. 💙

08/12/2026

Finally, Abby’s turn. 💜

After more than a year of planning and trying to make the timing work, Abby is officially participating in the Niemann-Pick Type C research study at Boston Children’s Hospital.

Led by Dr. Jaymin Upadhyay’s team, the study uses advanced, non-invasive brain MRI imaging alongside blood biomarkers and cognitive assessments to better understand how NPC affects the central nervous system and progresses over time.

For AbbyStrong, this is about much more than Abby’s scans.

Research in an ultra-rare disease depends on families showing up. We want to thank every NPC family who made the trip to Boston for this study and every family participating in studies, trials, registries, and research across all childhood dementias.

Showing up is not easy. It means travel, missed work and school, accessible transportation, medications, equipment, long appointments, and asking our kids to endure one more scan, test, or blood draw, all on top of everything families are already carrying.

The data researchers rely on doesn’t just appear. Families make it possible.

Today it was finally Abby’s turn to add her piece. Her scans and data become part of the bigger picture researchers can use to understand NPC, evaluate treatments, and ultimately work toward a future where childhood dementia no longer takes pieces of our children away.

Thank you to Dr. Upadhyay and the team at Boston Children’s, and especially to every family who keeps showing up for research. 💜

Every family. Every study. Every data point matters. 💜

08/10/2026

07/12/2026

Never Heard of It follows the journey of the small rare disease cha...

07/04/2026

06/30/2026

‼️Important information‼️

As many of you know, live-in caregivers were previously exempt from using Electronic Visit Verification (EVV). The budget passed by the General Assembly removed the exemption.

Countless self-advocates, families, providers, and organizations urged both the General Assembly and the Governor to restore the exemption during the budget process. Unfortunately, that did not happen.

What happens next? Before this change can be implemented, it must receive approval from the Centers for Medicare & Medicaid Services (CMS). At this time, we do not know the state's implementation timeline.

We are meeting with DMAS staff on Monday June 29th to better understand the expected timeline, implementation process, and what this will mean for families and caregivers. We will share updates as soon as we have more information.

We are grateful to the many self-advocates, families, providers, and partners who advocated throughout the budget process.

As the implementation process moves forward, we remain committed to keeping families informed, answering questions, and advocating for the smoothest possible implementation.

06/02/2026

We wrapped up and are heading home from the annual Michael, Marcia, and Christa Parseghian scientific conference for Niemann-Pick Type C research. Thank you and everyone else for another year of wonderful memories as we keep fighting NPC. 💪❤️

05/24/2026

Thank you National Organization for Rare Disorders, Inc. (NORD) and Newsweek for bringing attention to this.

Families living with rare diseases already spend every day fighting impossible battles. Adding more barriers to Medicaid access is not “cutting waste.” It risks cutting off therapies, specialists, home nursing, medications, and the stability medically complex children depend on to survive and thrive.

For the childhood dementia community, Medicaid is often the difference between receiving care at home with family or facing crisis level outcomes. Administrative burdens and coverage disruptions do not just create paperwork problems. They create real harm for real children.

NORD warns Medicaid work rules could harm rare disease patients.

04/30/2026

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