Friday, June 7, 2013

Welcome

There is a lot of traffic on the website due to the news coverage.  A lot of first time visitors.

The two videos on the right side bar will give you an idea of what our Omegaven Journey was like (Sam's Journey - the lower video), or what our one day trips to Boston are like (19 Hours - the top video).

There are also archives available of our blog going back to March of 2008.

Please feel free to contact us with questions at info@samoconnor.com.

In case you missed the Rock Center Episode here is a link to the full story:

http://rockcenter.nbcnews.com/_news/2013/06/07/18833434-drug-treatment-omegaven-that-could-save-infants-lives-not-yet-approved-by-fda?lite

Make sure to check out the post right below this one, and help out by signing the petition!!

http://www.samoconnor.com/2013/06/we-need-your-help.html

We need your help!

There is a huge issue facing this country that many of you reading this probably haven't heard about.  There is a shortage of many IV nutrients and medications in this country.

The problem doesn't just lie with IV medications either, just look at the list of medications that the FDA currently has listed on their drug shortages page.  Some drugs have been on this page for over a year.

http://www.fda.gov/drugs/drugsafety/drugshortages/ucm050792.htm

These shortages of IV medications affect a tremendous number of people who depend on TPN nutrition like Sam does.  Without these vital components of Sam's TPN he would not be able to thrive and be healthy.  In many cases there are no substitutions for these vital pieces of nutrition. 

http://www.washingtonian.com/articles/people/children-are-dying/

You may think that you are not affected by these shortages, but in the blink of an eye some medication that you do need could not be available when you need it.

What if you were diagnosed with Lyme Disease?

http://news.yahoo.com/lyme-disease-drug-shortage-prompts-nationwide-worries-171800552.html

or Cancer?

http://www.onclive.com/conference-coverage/asco-2013/Most-Oncologists-Say-Drug-Shortages-Are-Affecting-Treatment-Decisions-Three-Surveys-Find

There are multiple factors that are contributing to these shortages.  From bad policies and corporate greed, to an agency that is so broken it spends over 30 years trying to decide if a checmical that it is allowing in handsoap is safe or not:

http://news.yahoo.com/decades-old-anti-bacterial-soap-safe-163623053.html

Yes, this is the same agency that can't approve Omegaven (which is just refined fish oil) for use in the US without a double blind study (But absorbing triclosan through your skin is apparently fine).

It is time for a comprehensive and meaningful overhaul of the system that allows these shortages to occur.

The FDA continues to take action that is too little and often times doesn't help enough.

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm354272.htm

Help us tell Senator Tom Harkin (D-IA) and the Representative Upton (R-MI), the Chairs of the Congressional committees that oversee the FDA that they should do all they can to compel the FDA to immediately work together with the drug manufacturers to protect the lives of all Americans by:
1. Immediately resolving current IV drug shortages, by incentive, import, and expediting drug approvals.
2. Developing clear plans to prevent future IV drug shortages by the end of 2013.

Protecting the lives of infants, children and seniors from a clear threat is not a partisan issue. Solutions are clear and Congress should do all it can before another child dies.

Please take a moment (it literally just takes a few seconds) to sign the petition below:

https://www.change.org/petitions/senator-tom-harkin-ia-and-representative-fred-upton-mi-compel-fda-to-end-iv-drug-shortages-now

Once you have signed it, please help spread the word to people you know.  With enough signatures we can hopefully bring some much needed attention to this issue.



Thursday, June 6, 2013

Preview of Omegaven Story.

A link to a quick preview of Dr. Nancy Snyderman's story that will air Friday on Rock Center, featuring quite possibly our favorite person in the world:

http://rockcenter.nbcnews.com/_news/2013/06/06/18802911-why-cant-more-babies-get-life-saving-new-drug-treatment-omegaven?lite

Full story airs 6/7/2013 at 10E/9C on NBC.

Wednesday, June 5, 2013

Omegaven story to run on NBC - updated date.

Just a quick note to let everyone know that the Omegaven story that Sam is part of on Rock Center with Brian Williams on NBC will air Friday June 7th at 10E/9C.  Please help spread the word that the date moved up from the 14th!!