Wednesday, January 4, 2012

The 'Net and Social Media Can Be A Wonderful Thing

Yesterday I decided to create a Jordan's Pink Angels page on Facebook to keep friends and family updated about Jordan and our upcoming walk. I sent out invites to other JA families and to our family members I knew would be interested. I also put a status on my personal Facebook page saying that I created J's page so anyone could go "like" it. When I went to bed this morning (at 4) I think we were at 45 likes. When I woke up at 9:30 we were around 60-ish. J's goal was to get 100 likes before the end of today so I posted and asked people to share her page. It is currently 8:36 PM Pacific time and we have 266 likes.

Over the last few years Jordan's goal has been to raise awareness. If you've followed us for a while you know she's had some trouble with people believing her. In June 2011 we even had an incident where a pharmacist questioned her JA. The videos we have posted on YouTube of Jordan at the infusion center and those of us doing our injections were her idea. She wants other kids to know they are not alone and she wants adults to know that kids get arthritis too BUT it's a different type of arthritis. Jordan knows the difference between the type of arthritis her Granny had, osteoarthritis (OA) and the type that we have which is autoimmune. She also knows there is no cure. She knows more about this disease then any child should.

What started out as a page to keep friends and family updated had quickly turned into an all out awareness campaign. I will be posting information about juvenile arthritis as well as other forms of autoimmune arthritis. Several of our JA families have pages and blogs so we will be sharing those as well. There are 300,000 children in the US alone who live with some type of arthritis and that is simply unacceptable. As Jordan says, "Even if it takes ONE THOUSAND years, we WILL find a cure!"

1 comment:

SarahDiane said...

Jordan's optimism is inspiring! Thanks for being so involved in raising awareness and hope!