New Video from NORD

New Video from NORD

Here is a brand New Video from NORD.  For those who have no clue what NORD is…it is the National Organization for Rare Disorders.  This site does not have the run of the mill type of conditions.  By “run of the mill” I mean those that are diagnosed frequently.

Awareness

This site is all of the hardcore, rare, little to no treatment type of conditions.  I am very excited that Mike Michaelis and his team have worked so hard on the OMS Life Foundation.

Who DOES NOT buy things from Amazon?  If you do, you can go to Amazon Smile and make all your purchases through there.  It is the same as Amazon only this time, a percentage of what you buy goes to a charitable donation.

This does not cost you a dime.  First, go to choose your charitable organization and type in “OMSLife Foundation” (in Cypress, TX).  Second, select that option.  Finally, anything you spend will help the foundation to raise money and more awareness for Hunter’s condition.

NORD Rare Disease Video Library

“The NORD Rare Disease Video Library houses educational videos on rare diseases for patients, caregivers, students, professionals, and the public. NORD works with medical experts and patient organizations to develop the videos, which are made possible by individual donations, educational grants, and corporate sponsorship. NORD is solely responsible for the content.”

All About Opsoclonus Myoclonus Syndrome

All About OMS

If you click on the above link, it will take you to an awesome video that explains OMS very simply.  All the things that are in my head, they have formed into a video.  Pleased as punch for them to highlight this condition.

OMS is not a “money maker” because it is so rare.  That means funding and research are not done because there is nothing for big pharmaceutical companies to make.  These kids are like human experiments.  It is all trial and error.

Let’s bring light and awareness to this condition and help kids get a PROPER diagnosis and begin proper treatment.  I don’t want another family to deal with all the things that Hunter has.

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