13435 No More

On Monday, March 9, 2009 at just after 11:45 am the world became a more hopeful place for Arden and our family.  

President Obama signed an Executive Order (EO) that repeals EO 13435 which previously banned Federal funding for embryonic and human non- embryonic stem cell research.

He also issued a directive that orders the Director of the Office of Science and Technology Policy to (in 120 days), “develop recommendations for Presidential action designed to guarantee scientific integrity”.  The details of the order are available at this link. 

Without debating the issue because that is not what Arden’s website is about, I’ll say the following...

Sound decision making comes from, in my opinion, personal perspective.  I don’t necessarily believe that we grow wiser with age as much as I believe that we gain perspective through our experiences.  There are some issues that if you are very lucky you will live your entire life without gaining any specific knowledge of.  I’d be hard-pressed to put the altering events of one’s life in some order of importance but I’m confident that a chronically ill child would be at the top of that list.  

There are many days that I question my judgement and when I do I seek the direction of far more knowledgeable people to help me make a decision.  From fixing my car to learning how to operate Arden’s insulin pump, I defer and defer to the people that know better then I.  

It is with that in mind that I ask you to defer to the parents and loved ones of the sick. To extend deference to those that have gained the perspective that only comes from watching their children, spouses, brothers and mothers suffer in ways that you hopefully can only imagine.

If you are a supporter of this research please reach out to your representatives and let them know that you appreciate and encourage the repealing of 13435.  

If you are unsure or against this research please consider extending me some latitude when I say that it is not only necessary but imperative that we defer to the scientists of the world when they tell us that, stem cell research is one of the most promising avenues that they can explore to cure and relieve the suffering of countless millions of people. Hope is the last bastion for the otherwise hopeless and taking it away is needlessly cruel.  Please give this amazing technology a chance to work because if it does, if that miracle happens, it’s effects will be too far reaching to imagine.  The world and the people living in it will be forever changed for the better.

When you are dealt the hand that Arden has been dealt, hope is often all you have.  So much time and effort is spent on just existing that little is left for anything else.  Accomplishing the mundane day to day activities and processes that happen in most lives without note are exhausting.  Eating, sleeping, taking a drive or going for a walk all require significant attention and energy, thought and concern.  Before my head hits the pillow, many nights much later then it should, I think, “maybe tomorrow will be different”.

Watching the President repeal 13435 was elating and it brought us more hope then we’ve had since the day Arden was diagnosed.  I know that a cure won’t be found tomorrow but until it is found, I and the tens of millions of people who survive on hope now have a little more to hold on to.  The knowledge that modern science is again using every tool at it’s disposal to find a cure for Arden is satiating, uplifting and calming and those feelings come into our life much less frequently then they did before diabetes.  We are grateful to the President and to all of the faceless advocates that never gave up the fight to return this promising research to the scientist that need it.  

The President’s remarks were elegant.  His speech is brief and available on ourvideo blog.