Guilbault Girls

17/09/2025

✨ Hot on the heels of the landmark PANS biomarker publication and the $1 million intervention grant, Prof. Russell Dale’s ever-inspiring team has struck gold again for our community.

This brand-new paper, published in Neurology: Neuroimmunology & Neuroinflammation, shows that IVIG actually reverses the underlying immune, ribosomal, and epigenetic abnormalities found in children with PANS

What does this mean?

For the first time, we have biological proof that IVIG has disease-modifying effects at the cellular level. A huge step forward in understanding PANS as an epigenetic immune-brain disorder, and in building the evidence base for treatments that change lives.

💙 PANS Australia is proud to have contributed financially to this research, alongside the incredible families, clinicians, and organisations who made it possible.

📖 Read the study here: https://www.neurology.org/doi/10.1212/NXI.0000000000200467

30/08/2025

14/08/2025

We all need to give ourself more grace.

02/07/2025

The Luckiest Light had its grand opening Monday in Havre de Grace, a non-profit dedicated to empowering individuals with disabilities through art, community connection and other initiatives. …

28/06/2025

Family as staff is not a loophole — it’s the backbone of sustainable, person-centered care.
✅ Family are often the most qualified caregivers.
No paid professional can fully replace the intimate knowledge, experience, and trust that family members bring.
Family know the individual’s medical history, communication style, triggers, preferences, and needs better than anyone else.
✅ Family provide far more than paid services.
Many families not only care for their loved ones but also feed them, house them, and cover countless daily living costs out of their own pockets.
Limiting their ability to be paid for formal support work is unfair when they already shoulder significant financial and emotional burdens.
✅ It protects the individual’s right to choose.
Self-direction means the person decides who provides their care. Limiting family as staff directly violates this fundamental right to choice and control.
For many people, trust and safety depend on being supported by someone they already know and love.
✅ It ensures stability and sustainability.
Direct support work is hard to staff. Turnover rates are high. Family members often step up when agencies cannot fill positions.
Family support helps individuals avoid crises, costly institutional placements, or service gaps that harm health and independence.
✅ It is consistent with state and federal law.
Maryland’s Self-Direction Act of 2022 specifically protects the right to hire family as staff.
The ADA and Olmstead decision support people living in the community with the supports they choose.
✅ It saves the State money.
Family as staff is often less expensive than agency staff or institutional care.
Many family members provide care far beyond what they’re paid, reducing overall service costs.
✅ Restrictions harm the participant.
Proposals to limit family as staff increase participant anxiety and threaten their ability to stay safely in their homes.
Forcing individuals to rely only on outside workers ignores real-world staffing shortages and disrupts continuity of care.
✅ Targeting family is discriminatory and unfair.
Families should not be punished for stepping up to provide care that the State struggles to deliver.
Such restrictions disproportionately harm people with significant disabilities who rely on trusted, consistent supports.

13/06/2025

Every day, PANS/PANDAS caregivers carry an emotional load most will never see.
They are exhausted, invisible — and unstoppable.

🧡 Know a caregiver? Send this to them.
📣 Part of this journey? Share your voice in the comments.
🌍 Want to help? Get involved at lookfoundation.org