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Author Archives: zeighami
In the face of unimaginable difficulty, it seems that inspiration is sometimes hard to come by. In my journey, there are two men that I have looked up to: Mark Dant and John Crowley. I met Mark just a few … Continue reading
Written when he was 9. Google his name and see who he was. Amazing story of an amazing boy.
I had the honor of presenting my old friend, Adam Nelson, a “Champion of Hope” award at the RARE gala last week. Adam is a 3 time Olympian and 2 time silver medalist.
We are proud to be a small part of history in the advancement of ULTRA/FAST. In this video Congressman Sterns tells our story, though he doesn’t use our name
I let Reed stay up a bit tonight and play with his sister. As I work from my office, I could hear his infectious laughter from the other room. He couldn’t settle down for bed and I am wondering if this is … Continue reading
Over the last 18 months I have shared the story of our struggle with our son’s condition. There are days when it seems manageable and days when it feels like a living hell. It seems like my world is filled … Continue reading
It has been 1 year, six months and one week since Reed was diagnosed and I am tired. I am tired of riding this rollercoaster.
The Unlocking Lifesaving Treatment Act of 2012 (HR 3737) is giving the rare disease world new hope. Across the country, people with rare diseases (roughly 10% of the population) and others are coming together at the grassroots level to show … Continue reading
Patient advocates have amazing power. The 1983 Orphan Drug Act enabled an entire industry treating rare diseases. However, the fact is it wasn’t enough. A huge portion of the 7000+ rare diseases are still without treatment. This upcoming year, a … Continue reading