AbbyStrong Fights NPC

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. 💪❤️

06/02/2026

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

Share! 💪💜

04/29/2026

Are you or a loved one on the DD Waiver Waitlist? Did you know that you need to update your choice form at least annually to remain active on the Waitlist? Take Action Now! Visit https://www.wamsvirginia.org/WAMS/Ltss.Web/WaitlistPortal/Login and update your choice form to remain on the Waiver Waitlist today (if you haven’t updated your form in the past year).
If you do not update your choice form at least annually, you may be at risk of being removed from the waiting list.

04/29/2026

This Mother’s Day, give a gift that gives back. 💖✨

Shop Give Back this Sunday, online or in store, and support AbbyStrong Fights NPC in the fight against childhood dementia.

🛍️ In Store: Mention AbbyStrong at checkout
💻 Online: Use code GIVEBACK-LZFSN
📅 Sunday only

20% of your purchase will help fund advocacy, awareness, and support for families facing rare childhood dementia.

Last time, our amazing community showed up in a big way. Let’s make this one even stronger.

Please share with the moms, daughters, grandmothers, friends, and anyone still shopping for the perfect Mother’s Day gift.

RareDisease ShopForACause RichmondVA

04/29/2026

Every day lost is permanent damage that can’t be undone in progressive neurological diseases. Childhood dementia is relentless and an average 5 year diagnostic odyssey is unacceptable.

04/29/2026

Today is Undiagnosed Day.

Behind every unanswered case is a child, an adult, a family waiting for answers. Diagnosis can unlock care, community, treatment pathways, education supports, and hope. We stand with every family still searching. No one should have to fight alone.

04/29/2026

Today, on Undiagnosed Rare Disease Day, we recognise the many individuals and families still searching for answers.

For those living with Niemann-Pick diseases, the path to diagnosis can often be long and uncertain. That’s why initiatives like us, the INPDR International Niemann-Pick Disease Registry, are so important—helping to build knowledge and ensure that data collection supports ongoing research and earlier diagnosis.

Today also brings an opportunity to come together as a community...

An open space to connect, share, and ask questions about the INPDR is taking place today, hosted by the National Niemann-Pick Disease Foundation, Inc. as part of their Community Connections Chat.

🗓 TODAY at 6:00 pm ET

This informal and welcoming session will feature:
🔹 Solomon Mbua, INPDR Global Lead, Registry Programs
🔹 Harry Koujaian, INPDR Ambassador
🔹 Justin Hopkin, MD, INPDR Chief Scientific Officer

Whether you are newly diagnosed, still searching for answers, or supporting someone on this journey, this is a valuable opportunity to learn more, ask questions, and connect with others.

🔗 Register and join the conversation: https://us02web.zoom.us/meeting/register/Jb82Vrk1QfKaeO1W-tOy4A?fbclid=IwY2xjawRe6qZleHRuA2FlbQIxMABicmlkETE1Y3VYR3hZeWttcXM5STg1c3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHr8YwYdHIBKzH2qh-4fPl7_H_2qVr8ic0w5Loh3EljzL3Wk85tiAUILp_tkf_aem_AelSlETfLkwh8tuxgI07TA #/registration

Together, through shared knowledge, data, and collaboration, we move closer to earlier diagnoses and better outcomes for all.