Author Archives: zeighami

About zeighami

My name is Roy and I am a husband and father to two children. My daughter Aziza was born in 2003. My son Reed was born in 2007 and has Sanfilippo Syndrome type A, a terminal genetic disease. This blog is our personal story and my thoughts on life. These thoughts are my own and don't necessarily reflect the position of the foundation which we created, The Sanfilippo Foundation for Children.

Seeking Inspiration

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

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It is too much too hope for by Jonathon Wilson-Fuller

Written when he was 9.  Google his name and see who he was.  Amazing story of an amazing boy.

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Olympic Size Hope

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.        

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In the Rearview Mirror

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

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Our Nightly Ritual

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

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Who am I?

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

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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.

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The Grassroots are United Behind ULTRA

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

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Telling our story

 

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Unlocking Lifesaving Treatment Act of 2012

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

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