Well everyone this will be my last blog post for my internship. Today is my last day in the office and it is definitely a little sad. I will miss everyone here so much. All of the people I work with are fantastic and I have learned so much from them. I have learned so many different aspects of PR campaigns. Researching Niche Media has definitely been interesting; learning different outlets to advertise with is an asset to any campaign. The press release articles I have been writing have helped me to strengthen my writing skills and will help me in any other future pursuits. Most importantly I feel like I have made a difference. I’ve learned so much more about myself that I could have ever thought possible. I lived in NYC by myself for a month, that’s a big accomplishment in itself. The life lessons along with the PR lessons I have learned are insurmountable. I am at a point in my life where I needed to learn to be independent, and I have. I feel that this internship prepared me not only for a job in the field but for an exciting fast paced life. Although I miss Ian and will every day I can keep going.
Friday, July 1, 2011
Thursday, June 30, 2011
New Article about a Concert for Cooley's
Hey everyone check out this article I wrote about my Cousin -in-Law Sarah and what she's doing to make a difference for people with Thalassemia :)
http://cooleysanemia.org/index.php?option=com_content&view=article&id=490:benefit-concert-for-caf-in-pennsylvania&catid=1:latest-news
http://cooleysanemia.org/index.php?option=com_content&view=article&id=490:benefit-concert-for-caf-in-pennsylvania&catid=1:latest-news
TAG Conference
Well this last week has been very busy. On Friday of last week I went to Disney land in Anaheim, California for the Thalassemia Action Group conference. It was one of the best experiences of my life. I mean that in all sincerity. The people I met at this conference have forever changed my life and my view. Every single patient and family member of a patient that I met is completely awe inspiring. It makes me feel so great to see people with thal living normal fulfilling lives. I would be lying if I didn’t say some of the weekend was difficult. It was, I had this empty feeling in my heart the whole weekend something was missing and that something was Ian. He has made the biggest impact on my life out of anyone I have ever met. We shared everything for so long and whenever there is a big event it always makes me miss him more. Especially this event, I think that if Ian had gotten more involved with TAG he may have had an easier time with compliance. I think conferences like this from the time children are adolescents to adulthood will be some of the most helpful experiences. Everyone at the conference is there for one another and I think that is the most important thing about TAG and CAF. The overwhelming sense of friendship shared by everyone is huge and I think that will always be what saves a thal patient the most. More than transfusions, chelating, and any other surgeries, friendship with other patients is what makes all the difference. I will be forever changed by knowing these people and I hope I can make the conference next year as well. A study Ian participated in (Pain in Thalassemia Patients) was presented at the conference. I had to take a break after that it was too much to handle all at once. But then I met more and more people and all I could think about was how far they have come and it cheered me up. I think I met Ian for a reason every day I believe we were sent to each other. We needed to show each other what it truly was to be loved by someone; Ian needed me to be happy so that his last few years were full of love and not emotional pain. And Ian needed to show me what it was to be appreciated. We were supposed to meet, and I was supposed to do this (at least that’s what Ian said, those were his words not mine). I am supposed to help all these people. It’s a lot to take sometimes, it’s a tremendous feeling. After I got back to NYC Ian’s family came to visit me in the city. We went to all my favorite places; strawberry fields, Rockefeller center. We also visited Times Square Canal Street and Chelsea for a wonderful dinner at Tellos. It’s been six months now that I’ve had to live without Ian. It’s a weird month marker that first six months. I still wake up and don’t want to get out of bed and just don’t feel like living anymore. But then there are also some days that I wake up and feel good about helping others and that’s what pushes me through the day. As long as I feel that I am helping others I can keep going.
Tuesday, June 21, 2011
Internship
Hey there everyone. I’m back from another eventful weekend. Friday afternoon my best friend came to NYC for a weekend visit. She knew it was going to be a rough weekend for me and I was definitely happy she came for support. I think this past week has been the hardest week in the last few months. My and Ian’s anniversary was on Saturday and the whole week leading up to that day was like another step back. I am moving forward again though. Friday night we went to this awesome restaurant called Ninja. It was in the soho area and it was a blast. The restaurant is so fun and so pretty. When you get there its all dark and you have to ride in an elevator downstairs. Then you have to walk through this dark path and when you get to the end the restaurant has recreated a beautiful Japanese feudal village; Bridge, music, huts and all. I highly recommend this place if you are looking for something fun and cheesy to do. Saturday we woke up early headed to midtown for some muffins from Magnolia’s Bakery and some shopping. Then we decided to go to the Museum of Natural History. It was so much fun. Then we went to find some flowers. For my and Ian’s anniversary I wanted to put flowers at the imagine stone in strawberry fields in central park. I know that is what Ian would have wanted to do if he was here. So we got some beautiful flowers. I started to get a little emotional as I was putting all the flowers together. This old hippy came over to me and said “Sister, remember things will always get better” and then he set all my flowers up around the peace sign so that it made a really pretty picture. He saw the card I left and said to not worry because Ian was with God and he was with John. It’s amazing what one random person being kind can do. Then Saturday night we met my friend that lives downtown for dinner. Sunday we had a nice brunch on the Upper East Side. All in all it was a good weekend. Now I’m back in the office working on mostly the same stuff as last week. I am still researching niche media’s. This includes online newspapers, magazines, and blogs. I tried to stick to Italian American, Greek American, Turkish American, Middle Eastern American, Asian American, and Indian American. I am also working on helping the facebook page by asking questions to our friends on facebook. This week I will also start writing articles about two concert benefits this summer. Until next time.
Monday, June 20, 2011
Friday, June 17, 2011
Internship Update
Hey there everyone. Well I’m half way through my internship and I can’t believe how the time flies. My article for Healthy People 2020 is finished. I will post it here today. I also will be discussing what the foundation can do to help promote Healthy People 2020 to the Thalassemia community. I am also doing research on Public Service Announcements. I think it would be beneficial to make a PSA that is targeted towards getting tested for the trait. Along that note I am also doing research for niche marketing. Niche marketing is a way to target certain demographics. That means I am looking for Italian, Greek, Turkish, Pakistani, Middle Eastern, Indian, and Asian forms of media here in the U.S. to help us get the word out. These are the ethnicities that Thalassemia directly affects. I am also working on making the Facebook and twitter a better destination for members to go to. Any ideas? I would be glad to hear them. The more and more I learn about other Thalassemia patients I also learn that this can be treated and doesn’t have to happen to others. It just reinforces my mission each week to help those with compliance and help to find new ways for patients to connect. This week has been a little rough. My and Ian’s anniversary is on Saturday and I just don’t know what that day is going to be like. Thank goodness my best friend is coming into town to visit. She’s the best and I love her dearly she has been a tremendous support throughout these last months. I think we are going to spend that day going to some museums and then I am buying flowers to leave at Strawberry Fields. I will have pictures to post soon too. Until next time everyone.
Monday, June 13, 2011
Week 2 of my internship with the Cooley’s Anemia Foundation
It is so hot in NYC today; thank goodness the office is nice and cool. Also thank goodness my apartment is cool too. That’s a real blessing for a lot of student apartments as fairly priced as mine. This week I continue to work on the article about Healthy People 2020. It has a lot of different objectives. Once the article is completely revised I will post it on here for everyone to read. I have also been working on research for a website called caringbridge.org. This website enables members to interact and share their journey dealing with any health related disorder to everyone in their family all at once. I think this would be a beneficial partnership for the foundation, because it makes the lives of patients and families just a little bit simpler. The website would also say they are partnered with us and put us on their website. This would also help to get more exposure. I have also been working on the new facebook fan page. The groups on facebook are all being archived soon, so this was the perfect opportunity to update the group page and make it a little easier for fans of the foundation to join and communicate. Now all you have to do is “like” the page on facebook and it connects you to many new options, while still functioning the same as the old group did. Also I had to use the office phone today, not really sure how to completely use it but I will learn. Another short blog post not too much new info going on, just trying to stay cool during my summer in the city.
Tuesday, June 7, 2011
Week 2 of my internship with Cooley's
Ok so not much new to post today. I am still working on my article, I want to make sure it's perfect. Anyone who knows me knows I'm a perfectionist and can get a little ocd sometimes (more like alot all the time). But so is the life i guess. I am really feeling good about working here. I would be lying if I said it wasn't difficult at times. It does get emotionally challenging, especially like I said before when talking about treatments and people with Thal staying in good health. It gets to be very hard to deal with many days once again just wishing Ian had taken care of himself better before I knew him. I get by though thinking I am making a difference, I am doing something not just sitting around talking about it. I am actually doing something about it. I was thinking while I was in the office what it would be like for Ian to come visit. I know he would have been very excited to see what the foundation does instead of just reading the newsletter. Yesterday I realized the Cooley's Anemia cause on facebook, isn't actually linked to the foundation. The cause that is linked to the foundation is called Cooley's Anemia Foundation. I sent new invites out, but I just want to put it here also. Sorry for any confusion, I know I send out invites all the time for the other one. But please accept the invites for the Cooley's Anemia Foundation. You can do both but the one with foundation in the title actually benefits the foundation. That brings me to my new task, today I am creating the Cooley's Anemia Foundation fan page. This will hopefully prove more beneficial than the group. With the fan page you will be able to "like" the foundation and there will be more pictures, features, and maybe advertising. Once the page is made we will be able to assess that aspect better. As for what I've been doing in NYC, yesterday I walked around central park with a friend of mine that lives here. I am so happy that she is also here to hang out with. She is a wonderful person and I appreciate her support and letting me vent when everything gets me down or frustrated. I also found John Lennon's apartment building yesterday. It's beautiful I wallked all around it and stood where he was shot. It was a very strange feeling. The area is so beautiful I can't even imagine anything bad ever happening there. It's an odd thought I suppose, it kind of reminds me of my situation. He woke up that day not knowing what was going to happen, Just like Ian and I woke up on that Tuesday in December not knowing what would happen. John lennon died on a Monday in December. It is odd the way lives are connected in strange coincidences. I decided yesterday I am going to stop at that apartment bulding on my way to my upper west side apartment everyday. I like to think that Ian and John met now, I like to think that they watch me stop there on my way back from work. It may be a silly notion I know, but it's the little things that get you by. I found a great family style restraunt on that same street. When Ian's family comes to visit I plan on taking them there. Well back to the rest of my day. I will post more photos and entries as the week goes on.
Monday, June 6, 2011
Friday, June 3, 2011
Now that you know my story.... time to tell you what I've been up to during my first few days
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.
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.
Thursday, June 2, 2011
Why did I choose Cooley's
Hey there everyone,
So I've never written a blog before, please bare with me. I thought this would be an interesting way to share my experiences and raise some more awareness for the Cooley's Anemia Foundation. The Cooley's Anemia Foundation helps those suffering from a blood disorder called Thalassemia. The disorder affects a persons hemoglobin when in the beta and alpha, intermedia and major forms. I won't go into to too much more detail or this blog post would probably be 20 pages long, but please go to http://www.thalassemia.org/ and learn as much as you can about Thal, the website has alot of great resources for people interested in learning about Thal and getting innvolved. I decided to do my internship with the Cooley's Anemia foundation last summer when my fiancee Ian suggested it as an opportunity. Ian was diagnosed with Beta Thalassemia intermedia when he was still a child. He had undergone countless surgeries and more blood transfusions than I can count. He also chelated every night (well he chelated every night since we had started dating anyways). Chelation was the only way to get rid of the excess iron from the blood transfusions. He wasn't chelating for a long time before I met him, because he simply (as he put it) did not care to anymore. This happens alot with thal patients, it is a very rough and annoying process. However I told him when we decided to start dating, listen buddy either you chelate or this isn't gonna happen. Harsh... maybe, effective... Yes. So for the next two years of our relationship we dealt with all the transfusions and the chelating, and the hospitalizations. It amazed me that he continued to try and be as normal as possible, I had the most infinite amount of respect for him, more than I think I ever had for any one person. He went to school for Physical Therapy, was in a band called The Red Eyes for a while, we did most normal things that 20 something couples do. Sometimes it was hard, but I think dealing with Ian's Thal made us closer and more in love. I was so in love with him, he was funny, intelligent, clever, kind, and did I mention handsome, yeah he was a definite hottie. The day he asked me to marry him was the happiest day of my life. We were convinced that if we just did everything right, and just kept loving that God would help us. I guess God works in mysterious ways, because this past december Ian was hospitalized for his liver enzymes going up. Everything looked like it was going to get better though. This had happened in March and Ian recovered and we went back to living our normal lives. However the doctors discharged Ian, and said he'd make a full recovery. He didn't He was discharged on Friday December 24,2010, and he passed away on Tuesday December 28, 2010. So Basically my whole life plan had to change. Everything we had worked for together, everything we were planning on doing the following year, graduating and getting married seemed like a dream so far away. I was lost and I mean I have never been more of a wreck in my entire life. It lasted months, heck I still feel like that most days. I don't know if it will ever get better. But I do know nobody should ever have to feel this way. This is a feeling I wouldn't wish on my worst enemy. I realized that I wanted to make sure nobody has to feel this. I decided to go back to school and continue on my internship path with the Cooley's Anemia Foundation. I want to make sure I can help others with this blood disorder so that they can all live happy healthy lives, along with all of their loved ones. I was able to work with the foundation during the spring 2011 semester. My PR Cases and problems class decided they wanted to help me with my cause. Shout out to all of the students in my class right now they are all AWESOME, words can't even begin to explain the calibur of these students. We worked with the foundation and organized the Bloomsburg University Care Walk, "Walk This Way to Find a Way". The event was a complete success raising close to 6,000 dollars. It was also a lot of fun. So that brings me to today. I moved into my apartment in uptown New York City at the beginning of the week, and I started my internship on Wednesday June 1, 2011. So now that you know a little more about me and my background and why this cause is so important please keep reading my blog :). I will have updates on what I'm working on with the foundation, my life as a working city girl, and any other good information about thal I can find. Please feel free to leave comments or questions. I will definitley answer all questions.
So I've never written a blog before, please bare with me. I thought this would be an interesting way to share my experiences and raise some more awareness for the Cooley's Anemia Foundation. The Cooley's Anemia Foundation helps those suffering from a blood disorder called Thalassemia. The disorder affects a persons hemoglobin when in the beta and alpha, intermedia and major forms. I won't go into to too much more detail or this blog post would probably be 20 pages long, but please go to http://www.thalassemia.org/ and learn as much as you can about Thal, the website has alot of great resources for people interested in learning about Thal and getting innvolved. I decided to do my internship with the Cooley's Anemia foundation last summer when my fiancee Ian suggested it as an opportunity. Ian was diagnosed with Beta Thalassemia intermedia when he was still a child. He had undergone countless surgeries and more blood transfusions than I can count. He also chelated every night (well he chelated every night since we had started dating anyways). Chelation was the only way to get rid of the excess iron from the blood transfusions. He wasn't chelating for a long time before I met him, because he simply (as he put it) did not care to anymore. This happens alot with thal patients, it is a very rough and annoying process. However I told him when we decided to start dating, listen buddy either you chelate or this isn't gonna happen. Harsh... maybe, effective... Yes. So for the next two years of our relationship we dealt with all the transfusions and the chelating, and the hospitalizations. It amazed me that he continued to try and be as normal as possible, I had the most infinite amount of respect for him, more than I think I ever had for any one person. He went to school for Physical Therapy, was in a band called The Red Eyes for a while, we did most normal things that 20 something couples do. Sometimes it was hard, but I think dealing with Ian's Thal made us closer and more in love. I was so in love with him, he was funny, intelligent, clever, kind, and did I mention handsome, yeah he was a definite hottie. The day he asked me to marry him was the happiest day of my life. We were convinced that if we just did everything right, and just kept loving that God would help us. I guess God works in mysterious ways, because this past december Ian was hospitalized for his liver enzymes going up. Everything looked like it was going to get better though. This had happened in March and Ian recovered and we went back to living our normal lives. However the doctors discharged Ian, and said he'd make a full recovery. He didn't He was discharged on Friday December 24,2010, and he passed away on Tuesday December 28, 2010. So Basically my whole life plan had to change. Everything we had worked for together, everything we were planning on doing the following year, graduating and getting married seemed like a dream so far away. I was lost and I mean I have never been more of a wreck in my entire life. It lasted months, heck I still feel like that most days. I don't know if it will ever get better. But I do know nobody should ever have to feel this way. This is a feeling I wouldn't wish on my worst enemy. I realized that I wanted to make sure nobody has to feel this. I decided to go back to school and continue on my internship path with the Cooley's Anemia Foundation. I want to make sure I can help others with this blood disorder so that they can all live happy healthy lives, along with all of their loved ones. I was able to work with the foundation during the spring 2011 semester. My PR Cases and problems class decided they wanted to help me with my cause. Shout out to all of the students in my class right now they are all AWESOME, words can't even begin to explain the calibur of these students. We worked with the foundation and organized the Bloomsburg University Care Walk, "Walk This Way to Find a Way". The event was a complete success raising close to 6,000 dollars. It was also a lot of fun. So that brings me to today. I moved into my apartment in uptown New York City at the beginning of the week, and I started my internship on Wednesday June 1, 2011. So now that you know a little more about me and my background and why this cause is so important please keep reading my blog :). I will have updates on what I'm working on with the foundation, my life as a working city girl, and any other good information about thal I can find. Please feel free to leave comments or questions. I will definitley answer all questions.
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