Let’s Get Ready to Rumble I have to say I’m a little jealous. There are some people out there who are running away with some rock bottom deals. It’s hard to believe the auction is almost over, but the smart buyers always stake their claim early. So with only two bidding days left, I thought this would be an excellent […]
Recently I’ve been working on a new funding application for a much larger superficial siderosis research project. While this exercise requires listing and rewriting the exact details I share repeatedly, I realized the most crucial question is, why does superficial siderosis research matter? What separates our rare condition from the 7,000 other rare diseases and disorders to make us special […]
Rare Disease Legislative Advocacy In A Virtual World Every year representatives from rare disease organizations from across the country travel to Washington DC. We advocate for legislative issues of importance to the rare disease community by sharing with our legislators and Congressional staff how healthcare policies impact our rare journeys. This annual event also provides a unique opportunity to meet […]
On Saturday, June 26, 2021, after struggling to breathe for nearly 30 hours, my Mom “took her big trip” at 11:45 am. That’s what she’d say when someone died or when she contemplated her own death. As fate would have it, my brother and I were the only family members in the room. Corey was on her right side, holding […]
Saturday morning may have begun at our local community urgent care but it soon turned into a run to the emergency room 65 miles further down the road. Bless my daughter for driving the second leg because the past three weeks have been nonstop blood tests, appointments, and procedures. I’m tired and I know Gary’s feeling the strain. This is […]
Meet Children’s Author, Robert Cameron Robert Cameron has seen the world. Graduating with a degree in Marine Transportation from the United States Merchant Marine Academy he rose through the ranks and took command of his first vessel in 1980. A voyage that would continue for more than 25 years, Captain Robert traveled the world; Australia, New Zealand, South Africa, Japan, […]
Some say we’ve taken on an impossible task. Tilting at windmills. You’ll never raise the funding. Do you honestly think you’re going to bake sale your way to a cure? My answer is our enemy is real, and it has a name, Superficial Siderosis. We have clear goals; discover a way to stop the progression for everyone, including those who […]
