So day two of the blog. Normally I won't update everyday probably only twice a week, maybe three tops. With that being said and now that I've put my history up I want to talk about what I will be working on at the Cooley's Anemia Foundation. I moved into my apartment on Tuesday, that afternoon I came into the office to meet everyone. Can I just say everyone in this office is SOOOOOOOO nice and really fun to work with. They all do amazing things and I can't be more thrilled to be here and work with them. So Tuesday was spent meeting people and learning my way around NYC, public transportation here is so crazy. Tuesday night I turned in early for my big first day. Wednesday I woke up extra early, made sure I looked super cute (not to brag but I totally did), and headed into work. I felt like such an adult getting on the subway and going to my office, I wore my sandals and changed into heels when I got there. Very working girl. When I got to the office everyone was there and met with me. I had a brief meeting with the National Executive director and the Communications Director about what I will be working on while I'm here. My main objective is Healthy People 2020. Healthy people is a health intitiatives program set up by the government. This year they have added 13 new topics (making a total of 42 topics all together), one of the new topics added is Blood Disorders (which includes Thalassemia, sickle cell, clotting, etc.), and Blood Safety. So my objective is to research and figure out what we as a foundation can do to alert people about Blood Disorders and Blood Safety as a new topic. To accomplish this I am writing two articles. One about the history and mission of Healthy People 2020 to give some background. The second article is about what you can do to help. I am also researching to see what the foundations actual innvolvement should be. Go to http://www.healthypeople.gov/2020/default.aspx for more information, or to http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=4 for specific information about Blood Disorders and Blood Safety.I am also toying with the idea of making some Public Service announcements for T.V. and Radio. The other thing I have been working on is how to help the foundation communicate through social media (like this blog). I have been looking at the new questions app on facebook, so if anyone reading this has invites from me to answer questions please do, it helps us to better understand some things. We are also looking into starting a facebook fan page where you can "like" it, instead of joining the group. The Cooley's Anemia profile page will also still be up. I am also researching RSS feeds. RSS stands for Really Simple Syndication. This may help get our name out there more often. We are also looking at how to work the advertisements on facebook. Maybe contacting some hospitals so that our cooley's anemia page will appear on their facebook profiles as an ad. I'm still trying to figure out how that works. Another Idea (shout out to my dad cause this was totally his idea) a pub crawl for Thalassemia. I haven't talked to anyone about it yet, so we'll see how the rest of my stuff goes and maybe I will propose this idea after all my other tasks are completed :). We also had a really nice lunch and I got to know everyone in the office a little better (My salad was wonderful).
Thursday I continued to work on all of the previous stuff. I also did intern stuff. Intern stuff includes running to Duane Reade and picking up gift wrap and then making super cute gift bags as thank you's. I talked to one of the ladies in the office. Her daughter is Thal Beta Major, and she seems to deal with it very well. Kudos to her she has a great job and she just sounds all together fabulous. After talking to her I started to realize chelation compliance is key for any thal patient to lead as normal a life as possible. If a patient is compliant with chelation, many extra problems will not occur. I was a little frustrated yesterday not going to lie about it. I thought about how Ian wasn't very compliant with chelating, but once again it was before I met him so I can't be mad about it. It's just a sucky feeling knowing that if before we met he had taken better care things may not be how they are now. But that just reinforces my mission, to help advocate for better chelation treatments and counseling for Thal patients. Especially intermdia patients. As my mother in law pointed out yesterday it's harder to learn how to take a treatment later in life. I think that may be something to think about how can we talk more to intermdiate patients about chelating and making it better for them. I want to maybe work on something to help you guys out, so any feedback would be greatly appreciated. Once again I will say this to anyone that may be reading my blog that has Thal. Even when you are down and out and things seem to be getting rough, remember someone needs you too, and you never know what life may bring you or have in store. This is why you need to take the best possible care of yourself now. Because I promise in the long run your life is going to mean so much more than you know to someone else that loves you. And once the damage is done it is hard to take it back. So please let me know what we can do to help you, and I will try my best to figure something out.
Anyways back to the rest of my day, I made the gift bags which is fine by me cause I love doing that sort of girly stuff. I am going to figure out how to start uploading pictures to here of stuff I have been working on. I also met up with one of my friends Wednesday and Thursday night. I explored the city. I am starting to get used to it. Until next time everyone and thanks for reading.
No comments:
Post a Comment