Thalassemia Patients and Friends

Discussion Forums => General Chatter => Topic started by: Andy Battaglia on February 16, 2008, 09:55:45 PM



Title: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Andy Battaglia on February 16, 2008, 09:55:45 PM
At this point in time I cannot guarantee that I can go to the Singapore conference even if somehow I can afford it, which seems unlikely. There are personal factors that won't be cleared up until summer, so I cannot make any commitment before then.

However, I am considering seeking sponsorship (perhaps from the drug companies, as Mia has suggested), and I would like some feedback from our members to show to the drug companies to support the contention that attendance will be better at the conference if I am present (gosh, that sounds egotistical, but isn't intended that way). If my presence at the conference is one of the deciding factors on whether or not you go to the conference, please let me know.


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Manal on February 16, 2008, 10:19:48 PM
Dear Andy

If you find out that it will also be better that we all sign a form or a petition and send them to drug companies, please let us know. Your attendence is so important to us all

Manal


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Zaini on February 17, 2008, 07:09:57 AM
Hi Andy,

As you know that many members of this site won't be able to go due to financial expenses,i am dying to go but i don't think that would be possible for me first due to expenses,and then due to my husband's buisness problems,like Sajid, who so totally deserves to be there,but won't be able to go unless any sponsor can pick him up,so the thing i wanted to say is that although we ourseleves won't be able to attend, but we'd love you to be there as our representative,unless you are bound with your personal problems,that's ok then,but otherwise if you would be there at the conference i'll feel like my voice is spoken there somehow.So plz let us know if we can do something,like signing a petition,running a net campaign to bring the matter to drug companies attention,which would help you to be there.

After so much you've done for us, i think we can atleast do the least,So plz let us know.

ZAINI.


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: §ãJ¡Ð ساجد on February 17, 2008, 07:45:14 AM
:rotfl

I'm still laughing at the fourth option! :biggrin

Andy, you forgot to add one that I had posted in the singapore thread:

I'd rather have Andy sent than myself :happyyes


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Canadian_Family on February 17, 2008, 02:53:41 PM
Its best if Andy can somehow attend the Singapore conference. These conferences can be very technical in nature and given Andy's knowledge on the subject I think he would be able to grasp most of it and able to question the presenters and represent the group.



Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: priya on February 18, 2008, 09:03:47 PM
I also agree with all of you. It will be really great if Mr. Andy can represent our beautiful family to the Singapore conference.

With Lots of Love & Regards

Dimple


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Danielle on February 22, 2008, 06:44:16 AM
:rotfl
I'm still laughing at the fourth option! :biggrin

Me too!  :rotfl

I'd love to go to the conference, but it's way too expensive.   :sadyup


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Andy Battaglia on February 25, 2008, 04:14:21 PM
I just got an email from the Singapore conference administrator, telling me to register soon because

Quote
Please note that there are limited rooms available during this period.

Excuse me? If they can't guarantee hotel rooms, why is TIF holding the conference there? They already had to change the dates once because of lack of hotel space and now we are told to book very early or risk not getting a hotel. I am sure there are many people like myself, who cannot yet commit to going for one reason or another, but if we don't commit, we will be living in the street.

TIF loves to choose the expensive locales for their conferences, but it really does price the average person out of going. Hey TIF, how about choosing a reasonably priced location for a change? What about India, where there are 40 million carriers? Why limit these conferences to those who can afford them? Why not strive for a more inclusive conference in a place with sufficient, reasonably priced hotel space?

More and more I see why Ashish had so little respect for TIF. It's a shame TIF can't have more respect for the patients.


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Canadian_Family on February 25, 2008, 04:23:35 PM
Very well said Andy.

It looks like TIF officials are looking for exotic places for their vacations more than patient welfare, may be next time they want to meet in the Caribbean.


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Andy Battaglia on February 25, 2008, 04:38:55 PM
Heheheh. Last time it was the vacation hot spot, Dubai. I agree 100% that the vacation and shopping potential of a location has much to do with the choices TIF makes. I was told by several patients that their local doctors went to TIF in Dubai, but were far more interested in the shopping than the conference. One patient told me that their group toured the Al Wasl thalassemia center and the doctors showed little interest in techniques that would improve the speed of transfusions, but were much more interested in quickly completing their tour so that they could go shopping!

I don't mean to detract from the Singapore thals, as they have as much right to ask for a conference as anyone, but TIF should have the responsibility of making sure that once they pick a locale, that it is supported and subsidized enough to make it reasonable for patients to go.


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Miaki on February 25, 2008, 11:00:18 PM
OH I SEE THE LIGHT......Finally I hear others saying what Ashish and I spoke about many many times before.

Yes TIF is all about TIF (the executive body - hmmmm perhaps only 2 members of that executive body  :rolleyes) Anyway I have many thoughts which I wont go there because you can't do that on a forum which has eyes of the unwanted.

Andy is a voice for many patients that are not able to attend. I am more than willing to do what it takes to get him there, however we need to approach the drug companies such as Novartis (the biggest one of all) ApoPharma, Ferriscan - didn't we or don't we have one of their reps on our forum? We need to perhaps write to Derek (Singapore society president) and put Andy's case forward see if he can help out in anyway. I am sure they are all going to profit from this conference, so why can't they fork out what it takes to have Andy there for all the patients that wont be able to go, after all his our voice.

In regards to hotel accomodation Andy, if I tell you what happened when we went to Greece and Italy I am sure you wont be pleased. As usual accomodation was too expensive so we patients resorted to finding cheaper accomodation which was across Athens which took you about 1 hour traveling time OR some of us stayed at other neighbouring hotels which where down a steep hill. Patients with heart problems and other health issues had to walk this steep hill morning lunch and night to go back and forth to the conference. Why didn't we take a taxi u say? Well as soon as we called for one they said to us it wasn't feesabile for them to come that far for such a short trip. (work that out lol) ANYWAY in Italy the same thing happened, most of the patients stayed in rooms spread across the resort which was a good walking distance. Meanwhile back in the actual conference TIF members had to simply get dressed and walk down to the lobby area.

YIHAAAAAAAAAAAAAAAA for equality and patient respect NOT :mad

SO come time now for Singapore there is a good handful of patients who can't afford to stay in the same hotel were the conference is being held so we have found our own accomodation, which is only a short walk from the conference centre. If you are thinking of going pleaes private me and i will direct u to the hotel.

We need as many people there as we can possibly get to Singapore. I totally understand it being so expensive, I have done it for the last 4 conferences now and they have always been over the other side of the world for me. I am blessed I am able to go however its nice to have something in my backyard for once. But without failure we all represent one another when we go and I am more than willing to do anything to help Andy get there. I wish all of our family here could go (that would be so crazy lol)

Miaki xx


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Andy Battaglia on February 27, 2008, 01:30:59 AM
Miaki,

Can you give me some guidance with contacting these companies? I don't really know who to contact and I also think it might help if others also contacted these companies to let them know what value I bring their companies by advising on the various treatments. Ferriscan has definitely done more business because of this group but the rep I knew previously and who I made a point of sitting down with at the Dubai conference, is no longer with the company. I do feel that in terms of the financial self interest of these various companies, that the help I give patients and parents in understanding the different tests and treatments and tips on tolerating the drugs, it is worthwhile to these companies having me help so many people. Providing me with the opportunity to attend the conference and continue to learn and afterwards apply the knowledge, can help these companies in the long run. They do not have the ear of the patients, the way I do and a symbiotic relationship can be of great benefit here. I hope we can make these companies understand that and contribute to my attendance in Singapore. I do take the conferences very seriously and am willing to bet that I attended more medical lectures than most of the doctors who were present in Dubai. I for one, cannot wait to hear the reports on the various trials that are beginning this year. I hope I can get the chance to do so.

We all wish TIF was a more effective organization and I would like to see much more contact between TIF and patients, but it isn't happening. At the very least, they should be directing people to where they can find proper care in their countries. I do feel that the Cooley's Anemia Foundation in the US is a more effective organization and commend them for having an active patient services coordinator who does help people find proper care. They also have a regularly updated site (thank you, Craig Butler) that keeps up on current events. TIF seldom updates their site, which is frustrating. The international organization should be one that patients can turn to for direction and that is not the situation. Maybe we need to demand more.


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: §ãJ¡Ð ساجد on February 27, 2008, 10:34:15 AM
Hi,

Is there any way CAF can help you get to Singapore? Do we have a member here from CAF?


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Smurfette on February 27, 2008, 10:45:07 AM
Miaki,

Are you definately going to singapore... if you are let me know...and if you want to share accomodation?

I want to go, but if I go and get a room of my own its expensive if you do share accomodation it works out much cheaper...

Let me know please
Smurf


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Miaki on February 27, 2008, 12:55:40 PM
Smurfette - Yes i am definately going to Singapore (providing all is well at the time with my family) I will keep you posted and notify you of any updates from the Australian contingent attending.

Andy - I am speaking with Novartis tomorrow so I hope to get some answers for u. In relation to FerriScan i know the gentleman u are referring too and yes he has left the organisation now. There were some difficulties within the business structure, however I have at the level of ownership, i will call them also tomorrow and chase things up for us (you)

CAF is great, I think Craig Butler does a wonderful job and he should be congratulated.

TIF ....dont get me started Andy ...lol    Anyway I will keep you posted but hassel me if i dont deliver please as u know i am forgetful sometimes, but i have been good lately

Miaki xx


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Andy Battaglia on April 17, 2008, 03:53:20 PM
I just posted this on Facebook in response to "are you going to Singapore?" I would appreciate the comments of those who would like to attend but cannot even dream of it financially.


What about equal access for patients to conferences or is that only for the org people? This conference has priced far too many patients out of going. It seems to be that unless you are sponsored that you can forget about going. I have talked to many patients who would love to go but the price is so far out of reach that it's not even in the realm of possibility. According to the registration requirements I can't go anyway because I have no patient whose documents I can produce.
Quite frankly this whole thing seems to be set up so that the org people can have a very nice time. So little is being done to allow regular patients the opportunity to attend. Please let me know when there is a conference intended for everyone. I really do not get the impression that this conference is  intended for the regular folk. A successful conference would be one designed so that the maximum amount of patients could attend, as was the first conference I attended in Pune, India. This does not even appear to be a consideration for this conference. The dinner price is a total insult and reveals an elitist attitude among the organizers. Frankly, they should be ashamed at the price. I have never spent that much taking a family of 7 out to dinner, let alone for one person! Obviously, regular patients and their families are not expected at this dinner. Ashish was right. TIF is an org that needs to be replaced.
I realize my comments won't make me any friends among the org elite, but I have always been about the patients and not the orgs.
Have a lovely time.


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Miaki on April 18, 2008, 01:36:05 AM
Andy  (please take a seat before reading this post and then perhaps have an oxygen tank near you incase of emergency. After reading this please note that I have not lost it but I'm trying to keep it together)

I would suggest we contact TIF to sponsor you  :rotfl (sorry i am laughing but......) ANYWAY...... Yes i suggest we ALL pleed with TIF to sponsor you to attend as webmaster of the forum because TIF is all about THE PATIENTS ( somebody bring me some water please)

After all Mr Englezos has been elected as a Board Member of the prestigious European Patients’ Forum (EPF), a highly influential umbrella group of pan-European patient groups active in the field of public health and health advocacy. SO IF WE START EXPRESSING MORE OF WHAT WE WANT we would hope he would listen. Also just as Mr Englezos, ANDY YOU are just as important and vocal for all the patients on this forum and beyond.

Miaki


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Andy Battaglia on April 18, 2008, 02:41:50 AM
For some perspective on what patients think, when the Hong Kong thals needed advice on a letter to the Health Authority, they came to me, not TIF. When parents needed someone to write a letter to an adoption agency to plead their case to adopt a thal child, it was I who wrote the letter, not TIF. (The adoption was approved and I like to think my argument, based on that country's own child policies, had something to do with the balance weighing in favor of the adoptive parents). As much as I do that is visible in posts for this group, that is about half of what I actually do. I do just as much research to answer personal messages as I do for posts. Basically, I do almost anything asked of me by patients and families and friends. I would hope a full organization could try to keep up. As much good that TIF has the potential to do, it just isn't working as far as giving patients a place to find help. We have filled that role by volunteer work of the members and administration, not for some reward but because people need help. Very simple isn't it? What a concept. Maybe the world could learn a thing or two from us. Anyway, much of the focus of my post was on the fact that patients can't afford this conference. I wish TIF would demand that a location can provide sufficient reasonably priced accommodations before they agree to hold a conference there. I know patients who live fairly close to Singapore and travel expenses would not be a big issue but between the registration fee and hotels, there is no way they can manage it. So much of the content of the conferences is aimed at patients and families and it's a shame more of them can't go. I feel it is a very valuable experience for all and more of an effort should be made to make the conferences more realistic for people in terms of cost. It shouldn't be some elite gathering. From what Eponine has said, TIF does almost nothing to help organize the conference, leaving it up to a mostly volunteer organization to arrange the whole thing. Why can't TIF help arrange at least the accommodations? Find some general sponsorship to work out better deals with the hotels to make it an affordable venture for patients. The president of TIF has extensive experience in the tourism industry and perhaps that should be put to better use for the conferences. I don't want locales to be disqualified because the cost of living is high there, but if TIF is going to choose the locales, then they should do more to make it possible for patients to attend.

And I agree, Miaki. Patients have to speak up and speak loudly. The professionals assume they know what everyone wants and needs but often they miss the mark. Patients need to express exactly what they want. TIF should hear from people about making conferences an affordable experience for all.

I'll take that oxygen now.  :wink


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Miaki on April 18, 2008, 02:52:23 AM
I HEAR YOUUUUUUUUUUUUUUUUUUUUUUUUUU I know who and what you do for the forum here.

My midnight your morning, meet me on msn (its a date  :wink) assist me in writing a letter and I will send it off myself and post it on the forum here for all to see.

hmmmm i tried to find a oxygen mask emoticon but failed. However I'll buy you a Singapre Sling in Singapore, coz I know you will be there.

Miaki


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Andy Battaglia on April 20, 2008, 06:32:46 PM
I really wonder if TIF would be willing to help me considering that I am sometimes critical of their inability to connect directly with patients. I hope they can look past the criticism and see that I also think TIF has done much for thals in many ways and that we are both trying to do what we can to help thals. Honestly, Novartis is another that could/should offer some help. Although I am at times critical of the profit motive when it comes to life-saving meds, I also do much to help patients understand how to use their products and what to expect and that sometimes patience is required before results will show up in ferritin tests.

To any group or company that thinks I am too critical:

I am here for the patients first and when criticism is due I will not hesitate. I hope all (including myself) can benefit from criticism and can do a better job by working to become better at what we do. Criticism can be of great help and I hope no one will be oversensitive about it and hold it against me, as it is quite apparent that I am dedicated to helping thalassemics.

I am willing to take any help I can get in any facet of my work and would greatly appreciate if any company or group can reach out to our group with a helping hand.


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: AstonDialo on April 21, 2008, 10:13:35 AM
ONE IN...

ALL IN !


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Andy Battaglia on April 22, 2008, 08:40:30 AM
OK, so I have this image in my mind of Ashish wagging his finger at me  :mom and saying "Be careful. If you ask TIF for help, they'll send you a bill for dues."  :rotfl I'd laugh more, but that was what happened to his association. To me, there ia a contradiction if I ask TIF for money, and I know Ashish would've given me some hell about it if I did. I think I'll pass. And as far as Novartis, all I can say is which Novartis? Novartis US? Novartis India? Novartis Canada? I'm not sure I follow this. Have you ever noticed that information from Novartis is country specific? I have. Why is information about Exjade that was added to the warning in Canada that was insisted on by the Canadian officials, only included in the information for Canada? Do they really have to be dragged kicking and screaming to include this info in every country's information? And why is each of these Novartis companies different companies? How can they tell the thals in Hong Kong that the drug, Asunra, which is identical to exjade and made by Novartis India, is made by a company other than Novartis, and so their price is irrelevant to the discussion in Hong Kong?

I do not want to ask for help from organizations or companies where it can in any possible way affect either the perception people have of my independence or more importantly, have me asking myself if I am allowing sponsorship considerations to affect what I am willing to say about them. I feel I can do more good if I am never beholden to anyone.

If I make it to Singapore it will be as always. I will cover the costs because it's important to go. I think the only way this group can ever accept funding is if it's a completely no strings attached and no expectations basis. And if I do make it to Singapore, I hope some of you can join me in raising a glass to Ashish.


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Manal on April 22, 2008, 11:42:25 AM
Andy, what is so special about the TIF conference, i know that  no body will refuse to attend any and each conference to have the latest informaton, but is there any thing special about hte TIF conference in particular? I ask this because i can see that around the world there are other conferences that are no less important in the subjects disccussed or the professors attending than the TIF conference.

manal


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Kathy11 on April 22, 2008, 11:25:15 PM
Hi Andy 
I am so proud of you ,
Intergrity is a quality or attribute that money cann't buy,
 :clap :clap
Always
Kathy


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Andy Battaglia on April 22, 2008, 11:29:18 PM
Kathy,  :hugfriend  Thank you.


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Andy Battaglia on April 23, 2008, 12:53:07 AM
Manal,

TIF conferences are the big ones. They draw the most top doctors and researchers. I have not seen a lineup at any regional conference that matches the international conferences. But even more important, is TIF is where the patients go and for me that is so important. Meeting and talking with patients is what the conferences are all about. Very few patients attend the medical presentations. It's not why they're there. They do attend the presentations aimed at patients and parents, but the social interaction with each other, the comparison of treatment in different countries, and just getting a chance to meet each other and see how other thals are doing is great for morale and developing friendships. If not for the fact that I have met so many people in person and made so many friends, I probably would not still be active in this group, as I don't have any personal involvement with any thals in my own life.


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Manal on April 23, 2008, 02:17:52 AM
I can understand now Andy, may God bless you. :hugfriend

Praying that you will attend this conference

Manal


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Sylvia on April 23, 2008, 06:38:15 AM
Hi Everyone,

My name is Sylvia and I work for Resonance Health, provider of FerriScan. I happened to come across your site while doing some research online. As I read through this thread, I realised some of you are enquiring on FerriScan.

I am here to help and provide any information you need on FerriScan. I will do my best in assisting and if there is anything that I can't answer, I'm sure someone in the office would have the answer.

I sincerely apologise for any inconvenience that Resonance has caused in terms of lack of communication in the last 18 months.

We are back on track right now :) You can count on me if you need any information. I also look forward to forming new friendships here in this forum.

PS: We would be attending TIF in Singapore in Oct. Our Chief Scientific Officer, also the founder of FerriScan, Dr Tim St Pierre would be attending the conference. Other company represetatives to be confirmed nearer to date.

Rgds,
Sylvia Goh


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Andy Battaglia on April 23, 2008, 06:51:36 AM
Hi Sylvia and welcome,

We have long been proponents of Ferriscan and I was able to meet with the rep that was at the Dubai conference in 2006. We have a listing for Ferriscan in our section on Treatment centers, at http://www.thalassemiapatientsandfriends.com/index.php?topic=259.0

Can you look this over and let me know if there are any corrections or additions to the links and locations? I can make any necessary changes if you let me know what's needed.

If I make it to Singapore, I'll be sure to stop by your booth and say hello.


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Sylvia on April 23, 2008, 07:01:17 AM
Hi Andy

Thanks....I will have a look on what's posted. I'm also a regular on the other thal site, assisting everyone with FerriScan information and updates :)

In future, I will post FerriScan information on both sites and I'm very moved by the strong support everyone is providing as this is my first time in contact with Thalassaemia and being on this job has greatly opened my eyes to many things.

Sylvia


Title: Re: The Singapore Conference: Are you more likely to go if Andy is going?
Post by: Sylvia on April 24, 2008, 08:58:55 AM
Hi Andy

I have gone through the FerriScan information on the link you have given me. There are definitely new updates. I have the latest info on an Excel spreadsheet which I can email to you. Would you please send me an email at sylviag@ferriscan.com so that I can reply with the attachment?

Many thanks

Sylvia