Check out the MAGIC Foundation
For our first video, I want to focus on the MAGIC foundation. Huntley's Adventures The MAGIC foundation is the largest North American, growth-awareness, non-profit organization. Their mission is to education on growth disorders resulting in a happier and healthier childhood and for parents. They have this awesome handbook here that you get once you join and it has tons of information including stories with plenty of RSS childs and other SGA information. It also has which we like to print off, is this super handy sheet for the hospital and emergency room and care givers to understand what is RSS and what they need to do. When we first starting going to the ER the first thing they would tell us that our son needs to be drinking ton Pedisure and get more calories into him.
As we all know thats not how to treat a RSS kid and that wont do anything for him. So this helps them understand exactly what is necessary for in-patient care. The website itself has got, clearly covers many different growth disorders... I'm going to focus on RSS because thats what Huntley has over here. They immediately have a bunch of information that you can get to but if you are new to this, where I suggest you start, is #3 - a free RSS screening. If you read this information you will see they offer a free RSS screening that will help you understand how to proceed with getting a diagnosis.
Its the easiest way to get started - and its free! The website also has a facebook page, of course, that you can go to. The facebook page helps you learn a lot about what is going on in the community and other parents with kids with RSS. They also have several secret or privet facebook groups that you can join once you this that will help you get more detailed information and more intimate information about parents going through different issues. Lastly, the MAGIC foundation holds a convention every year in July in Chicago where they invite parents and kids to come learn about whats going on in RSS community, latest updates and just to have some fun.
We decided to go last year and heres some highlights.. Lets just see.. Ah here is a good one. Thats it for this week, come back next week.
Whoa. Are you going to turn it up? Turn up the music?.
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