Hidden Innovations in Disguise
Share
🏛️An incredible week on the Capitol Hill with , where advocacy meets action. From learning from policy experts to being moved by the beautiful work of the Rare ARTists, it was a powerful reminder that we aren’t just sharing data - we’re sharing our stories. There is nothing like being surrounded by a community that truly gets it and is ready to drive real change. ✨
04/16/2026
In February I visited Washington D.C. for Rare Disease Week with EveryLife Foundation for Rare Diseases, advocating for the 1 in 10 Americans living with a rare disease. One of the biggest priorities we brought to Congressional offices is the Credit for Caring Act (S.925/H.R.2036).
Family caregivers are the backbone of our community, but they often carry immense financial and emotional weight spending thousands out-of-pocket every year to keep their loved ones safe and supported at home. This act would provide a federal tax credit of up to $5,000 to help offset those costs.
The best news? Our voices are being heard. Since Rare Disease Week, 8 new Representatives have signed on as cosponsors! 🙌
How you can help: Caregiving is essential work, and it’s time our laws recognized that. 🔗 Click the link to reach out to your legislators and request their support on the Credit for Caring Act! It only takes a minute to make your voice heard.
https://everylifefoundation.org/rare-advocates/take-action/
❄️♿ Winter at Notre Dame has been beautiful and challenging. Scooters get stuck and quick fixes don’t always work. Sharing this because accessibility has to work in real life and not just in theory.
Click here to claim your Sponsored Listing.
