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.

A Rare Disease Patient Perspective

I would like to use this blog post to explain why the rare disease community is different, and why it deserves a different approach to the approval of treatment. This weekend I started reading Inside the FDA: the politics behind … Continue reading

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Unlimited Matching for Team Sanfilippo: August 24th at 1PM EST

On  Wednesday August 24th – starting at 1PM Eastern, Vivint will be matching donations to participating charities.  Unlike previous matching rounds, there will be no limit to the maximum match.  (previously you could only donate $50). Here is the catch, … Continue reading

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Response from Vivint on the Proposed Rare Disease Conference

Vivint has created the Vivint Gives Back Project as a way to give money to deserving charities throughout North America.  Vivint also wants to help each organization involved raise awareness for their cause.  We have maintained and continue to maintain … Continue reading

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From the Shire Half Yearly Report

Just a short except from the report, it seems that investment is heating up!  That is a good thing. Research and development (“R&D”) R&D expenditure increased to $354.8 million for the six months to June 30, 2011 (19% of product … Continue reading

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Struck By Genetic Lightning

I just came up with a new phrase to show just how unlucky you need to be to get Sanfilippo Syndrome: Struck By Genetic Lightning.  What are the odds?  According to NIH, about 1 in 70,000.  How frequent is that?  … Continue reading

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The Cost of Over-Regulation

I tuned in to the PDUFA hearing in Congress last week. PDUFA stands for Prescription Drug User Fee Act. Here is a description of its purpose: The Prescription Drug User Fee Act (PDUFA) was enacted in 1992 and renewed in … Continue reading

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Reed was on CBS 11 in Dallas!

Many of you have probably already seen this, but here is the story that CBS 11 ran on Reed.  Carol Cavazos did a fantastic job. Thanks!’ Roy

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Aziza Made a Video for Taylor Swift!

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Vivint Video

Check out this video: Version #2, with different kiddos Thanks, Roy

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Reed has “the moves”

Who would think that this kid has a terminal disease? Sometimes I wonder if, because I am so worried about tomorrow that I am going to miss today.  Hard not to do, I guess.  

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