Advocacy

Happy New Year! I hope everyone had a great holiday season. Here is a bit of a wrap up of 2011 and a look ahead to 2012.

This past fall, the TSBDF has re-joined the Hemophilia Federation of America (HFA). If you haven’t been on the HFA website, I urge you to make it a priority in the next week or two. It is full of great information and resources that can be a big help to us - TSBDF. One of the best assets HFA gives us is in the assistance with advocacy. Traditionally, HFA has focused their advocacy efforts on national issues. But this past fall, they conducted a state advocacy survey of their members. Please click the link at the bottom for a copy of their findings. One notable priority is engaging advocacy across state lines. That’s the “T” in TSBDF, and that’s what we need to be about. Ohio, Kentucky and Indiana each have their individual strengths and we can pull those together to advance our cause regionally and nationally. As HFA develops their advocacy action plan for 2012, let us remember that HFA is here to assist us but we are to lead our efforts in our home states and region.

On Dec 9^th NHF posted a BBC article on a gene therapy study conducted on Hemophilia B patients. This article was also picked up by the New York Times and Cincinnati Enquirer as well as many other publications across the country and around the world. I’m not going to go into detail of the article but GREAT NEWS! If you haven’t read it, it is posted on the TSBDF www.tsbdf.com, NHF and HFA websites. The reason for my mentioning it is of course for the purposes of advocacy. Whenever we get press, especially world wide press, it helps to build awareness of the bleeding disorder community, our struggles and challenges. The more people outside our community who are aware of us, the stronger the foundation we stand on as we advocate for our cause. Now not everyone in our community has seen this article, so we can’t assume that everyone outside our community has either.

This article is a very valuable tool but only if we use it. So in the next few weeks, forward this article on to a friend or family member - someone who is not directly affected. We will start to grow our community when we start with making our loved ones more aware of our circumstances. No strings attached - just hey, did you see the great news about my bleeding disorder -I just wanted to share. We also want to use this article as we interact with our elected officials. You can highlight a few key points if you wish - they don’t always have time to read over everything handed to them. When they see an article from a third party like the BBC or New York Times instead of something we wrote ourselves, it gives us credibility. If you have connected with an elected official in 2011, this is a good opportunity to reconnect with them early in 2012. It could be “I thought you would be interested” or if they were helpful to our community this could be “thank you and its because of efforts like yours that we are able to make advances like this.” Keep it simple and make it your own.

In 2011 we have definitely started the ball rolling for the TSBDF Advocacy Committee. We need to celebrate our national and local successes so as we move into 2012 we can build on the foundation we have created.

TSBDF educational round table Jan 14 in the community room on the Levee in Newport, Ky

I look forward to the opportunities we have in 2012, and I wish you and your families a Happy and Great New Year!