NYLI non-voting Board of Directors position
If you are interested in the board position, please write a brief statement as to why you are the best person for this position no later than Monday, March 31, 2008. The annual duties for this position include:
-3 in person meetings (Annual Meeting, June Leadership, Washington Days)
-1 Conference call
-Committee work
Gin System
At Washington Days, we discussed having a better communication tool for the group. We set up an account with Gin System which is an interactive dashboard that will allow us to share files, e-mail, text message, post messages on a discussion board, instant message, post announcements, ask questions, update our calendar and much more on one easy-to-use website. Some other great features include the Facebook application and the ability to access the NHF website.
I am very excited about this. We hope that it will make our ability to communicate easier and no more being flooded with e-mails! Please stay tuned for an e-mail invitation to Gin System!
All the best,
Dorothy
Thursday, March 13, 2008
Wednesday, March 12, 2008
Response to blog.
Hey everyone, I want to thank you all for responding so quickly to this little site I created less than 24 hours ago. Below is the interview sent from Josh earlier today. Thanks again Josh!
Hope everyone is doing good and keep in touch,
Guy
Hello All You NYLIers,
Yesterday I met with John and was able to better understand his interest in creating this Team Hemophilia. I have written out the talk we had in a Q and A format. I hope this gives us a little more clarity into what NHF is trying to create.
Q. What is the main reason to involve sponsors like XM Radio, NBC, CBS, etc
A. NHF is primarily funded by five factor manufactures, such as Bayer. From a company perspective, it is not a good game plan to rely so heavily on one form of funding. With that said, certain drug companies, such as Baxter, have had profit losses due to some complications in one of their products called heparin (a blood thinner) that has killed people in countries other than the US. So, when complications arise for drug manufactures, funding has the potential to become scares. So, the creation of Team Hemophilia has the potential to diversify where funding comes from and creates publicity for a relatively small group of 20,000 hemophiliacs. He goes on to say that how does a group that does not have the chance of impacting the US masses, like cancer impacts most Americans in one way or another, can still get their name out and be heard. (These companies, like XM Radio give a percentage of income to donations, why not groups like NHF).
Q. Why is Bayer involved in this campaign?
A. Bayer has a vested interest in not having to pay so much money to NHF, so my understanding, it is because of Bayer that NHF is connecting to many of these other affiliates. So, Bayer is willing to have NHF's logo on a racecar because the more money NFH gets, the less Bayer has to pay. (His example he used is how Coca Cola will pay to have 7 Eleven plastered all over a racecar because Coca Cola has a partnership with 7 Eleven- Bayer has a partnership with us in that it pays for us to exist, so it will allow Team Hemophilia's logo to be on the car.
B. John says that Bayer also has a vested interest in getting us (NYLI) out to the different chapters across the country. Remember when Big Dog talked about the difference between getting 50 teens to Texas vs. sending a couple NYLI to various chapters across the country. Big Dog said that if we sent 50 to Texas, there is much more momentum and power in having 50+ people swaying around a bon fire than 5-10 showing up at one of the chapters we present at. With that said, John says that while the chapters will try to get a big attendance when we get there, John says that Bayer will also take the time to get families to come because they have the resources and the interest to do so.
C. John says that he is in contact with the chapters and are asking them what they want from NYLI when we get there. John and Jen (at different times during the day yesterday) said that they will help in creating different programs depending of what chapters want and prepare us if we want the help.
Q. Since there will be a lot of sponsors that will have their advertisements plastered on the bus, if an NYLI member does not want the bus image adds in the backdrop for whatever reason, will they have that choice?
A. John says that most of the coverage will be radio, and therefore, no images will be seen. (A radio might say after we speak that companies like XM Radio, ABC are proud sponsors of this event, but that's as far as it might go.) He also says if we do not want to do something, like stand in front of a bus to take a picture, than so be it. I know media has a tendency of portraying things however they feel fit, however I would like to believe that John and NHF will be our advocates in supporting our decisions, even if that decision does not bring as much money in.
Q. How is it that this idea of Team Hemophilia is happening, which requires NYLI's participation, and yet we were somehow were not as informed about it.
A. John says this idea originated back when NYLI talked about reaching out to chapters. Bayer liked the idea and this idea was created. John says that NHF has been affiliated with the racecar industry for a few years now, however not with this slant. He says the idea was in a pretty concrete form back during Annual Meeting and he assumed that we were all on board with it. I told John that my assumption was that many of NYLI were left in the dark about it and that hopefully there will be better communication in the future (if that is not the case, sorry for making the assumption). (For those of you who have been to NHF on the 11th floor on a NYC building, it is divided into two separate spaces which are separated by a huge conference room. There is a running joke that the east side (Jenn, Dorothy, Ann Marie side for instance) have no idea what goes on at the west side (John side) and vise versa. I think these are one of those moments where as the Far Side jokes say, the left hand did not know what the right hand was plotting. There is a first time for everything and if this summer event is a success, I can only imagine the communication will be stronger next time.
As far as NYLI raising money, I told John something that's great about the NYLI group is it does not matter how rich or poor a member is, when we get together as a group, we are all seen as equals. With that said, when you ask us to turn to our families for money, by doing that, you are challenging that boundary we have so successfully created. I said some NYLI members have said they feel a level of entitlement to help NHF for everything you have done for us, however, they have also expressed a lot of hesitancy toward going that far (I hope that was an accurate representation of at least some of your thoughts, because I truly do not want to be the spokes person who says how NYLI feels. Throughout the meeting I did try to remember to clarify what were my concerns and what I felt I heard what NYLI's members might have shared with me as concerns).
I did tell John that some of us in NYLI with some training might be willing to approach businesses for money, but not family. He stressed the value in us raising money, because of our numbers of roughly 20 and that as youth we have a voice he cannot have being a white old man (those were my words, not his). He said he would help in anyway possible if you are willing to look for donations that way. (and of course all the money goes to NYLI).
Alright, I hope all this makes sense and of course if you have any questions, feel free to call or write me back. John also said he is available for questions whenever they arise. Thanks for listening and I would like to hear feedback when you get a chance.
Your hemo Brother,
Joshua
Hope everyone is doing good and keep in touch,
Guy
Hello All You NYLIers,
Yesterday I met with John and was able to better understand his interest in creating this Team Hemophilia. I have written out the talk we had in a Q and A format. I hope this gives us a little more clarity into what NHF is trying to create.
Q. What is the main reason to involve sponsors like XM Radio, NBC, CBS, etc
A. NHF is primarily funded by five factor manufactures, such as Bayer. From a company perspective, it is not a good game plan to rely so heavily on one form of funding. With that said, certain drug companies, such as Baxter, have had profit losses due to some complications in one of their products called heparin (a blood thinner) that has killed people in countries other than the US. So, when complications arise for drug manufactures, funding has the potential to become scares. So, the creation of Team Hemophilia has the potential to diversify where funding comes from and creates publicity for a relatively small group of 20,000 hemophiliacs. He goes on to say that how does a group that does not have the chance of impacting the US masses, like cancer impacts most Americans in one way or another, can still get their name out and be heard. (These companies, like XM Radio give a percentage of income to donations, why not groups like NHF).
Q. Why is Bayer involved in this campaign?
A. Bayer has a vested interest in not having to pay so much money to NHF, so my understanding, it is because of Bayer that NHF is connecting to many of these other affiliates. So, Bayer is willing to have NHF's logo on a racecar because the more money NFH gets, the less Bayer has to pay. (His example he used is how Coca Cola will pay to have 7 Eleven plastered all over a racecar because Coca Cola has a partnership with 7 Eleven- Bayer has a partnership with us in that it pays for us to exist, so it will allow Team Hemophilia's logo to be on the car.
B. John says that Bayer also has a vested interest in getting us (NYLI) out to the different chapters across the country. Remember when Big Dog talked about the difference between getting 50 teens to Texas vs. sending a couple NYLI to various chapters across the country. Big Dog said that if we sent 50 to Texas, there is much more momentum and power in having 50+ people swaying around a bon fire than 5-10 showing up at one of the chapters we present at. With that said, John says that while the chapters will try to get a big attendance when we get there, John says that Bayer will also take the time to get families to come because they have the resources and the interest to do so.
C. John says that he is in contact with the chapters and are asking them what they want from NYLI when we get there. John and Jen (at different times during the day yesterday) said that they will help in creating different programs depending of what chapters want and prepare us if we want the help.
Q. Since there will be a lot of sponsors that will have their advertisements plastered on the bus, if an NYLI member does not want the bus image adds in the backdrop for whatever reason, will they have that choice?
A. John says that most of the coverage will be radio, and therefore, no images will be seen. (A radio might say after we speak that companies like XM Radio, ABC are proud sponsors of this event, but that's as far as it might go.) He also says if we do not want to do something, like stand in front of a bus to take a picture, than so be it. I know media has a tendency of portraying things however they feel fit, however I would like to believe that John and NHF will be our advocates in supporting our decisions, even if that decision does not bring as much money in.
Q. How is it that this idea of Team Hemophilia is happening, which requires NYLI's participation, and yet we were somehow were not as informed about it.
A. John says this idea originated back when NYLI talked about reaching out to chapters. Bayer liked the idea and this idea was created. John says that NHF has been affiliated with the racecar industry for a few years now, however not with this slant. He says the idea was in a pretty concrete form back during Annual Meeting and he assumed that we were all on board with it. I told John that my assumption was that many of NYLI were left in the dark about it and that hopefully there will be better communication in the future (if that is not the case, sorry for making the assumption). (For those of you who have been to NHF on the 11th floor on a NYC building, it is divided into two separate spaces which are separated by a huge conference room. There is a running joke that the east side (Jenn, Dorothy, Ann Marie side for instance) have no idea what goes on at the west side (John side) and vise versa. I think these are one of those moments where as the Far Side jokes say, the left hand did not know what the right hand was plotting. There is a first time for everything and if this summer event is a success, I can only imagine the communication will be stronger next time.
As far as NYLI raising money, I told John something that's great about the NYLI group is it does not matter how rich or poor a member is, when we get together as a group, we are all seen as equals. With that said, when you ask us to turn to our families for money, by doing that, you are challenging that boundary we have so successfully created. I said some NYLI members have said they feel a level of entitlement to help NHF for everything you have done for us, however, they have also expressed a lot of hesitancy toward going that far (I hope that was an accurate representation of at least some of your thoughts, because I truly do not want to be the spokes person who says how NYLI feels. Throughout the meeting I did try to remember to clarify what were my concerns and what I felt I heard what NYLI's members might have shared with me as concerns).
I did tell John that some of us in NYLI with some training might be willing to approach businesses for money, but not family. He stressed the value in us raising money, because of our numbers of roughly 20 and that as youth we have a voice he cannot have being a white old man (those were my words, not his). He said he would help in anyway possible if you are willing to look for donations that way. (and of course all the money goes to NYLI).
Alright, I hope all this makes sense and of course if you have any questions, feel free to call or write me back. John also said he is available for questions whenever they arise. Thanks for listening and I would like to hear feedback when you get a chance.
Your hemo Brother,
Joshua
Hey guys
Hey guys, this is Cecilio.
I'm bummed out I missed Washington Days, I heart it went well. So I guess we are not going to be communicating through this blog?
I'm bummed out I missed Washington Days, I heart it went well. So I guess we are not going to be communicating through this blog?
Tuesday, March 11, 2008
Retreat Committees!!
Hello Everyone!!
During our last day at Washington Days, we agreed that we would keep the 3 Committees {Agenda, Logistics, & Promotions} and we would have a "head" in each committee. The "head" would be responsible for delegating the tasks assigned to their committee, and would occasionally be on calls with Alex N., Shelly, Jen, Dorothy, and other committee"heads" so that all committees are on the same page, and planning can progress smoothly.
Having said this please post comments with the committee that you would like to be on by NEXT Wed. (3/19/08), or any questions you may have about each committees responsibility. At that point each committee can select a "Head."
Please be VERY honest with the amount of time you have available, so that you are not overwhelmed with NYLI, school, and whatever amazing things you may have going on in your lives!!!
During our last day at Washington Days, we agreed that we would keep the 3 Committees {Agenda, Logistics, & Promotions} and we would have a "head" in each committee. The "head" would be responsible for delegating the tasks assigned to their committee, and would occasionally be on calls with Alex N., Shelly, Jen, Dorothy, and other committee"heads" so that all committees are on the same page, and planning can progress smoothly.
Having said this please post comments with the committee that you would like to be on by NEXT Wed. (3/19/08), or any questions you may have about each committees responsibility. At that point each committee can select a "Head."
Please be VERY honest with the amount of time you have available, so that you are not overwhelmed with NYLI, school, and whatever amazing things you may have going on in your lives!!!
Monday, March 10, 2008
Hi
Hey everyone,this is Guy,Washington Days has come and gone with great success! It was a great experience for first time NYLIers and past members alike,to talk on Capitol Hill and hang out! June Leadership is just around the bend.... Hope everyone is doing good and keep up the good work and keep in contact.
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