Singapore Conference Report

Not only is synthetic vitamin E much less efficient, but it shouldn't be taken in high doses. When taking more than 100 IU of E daily, it needs to be natural E. My doctor now warns against using synthetic E in high doses.

And for those who keep asking "when do I sleep?" the answer is never.

Hold down the fort as I leave for home today and will not be available for the next 30 hours.

Have a safe trip Andy!
I just got home a few hours ago from my trip. 

Sharmin

Have a safe trip Andy. I just got home from singapore this morning too and my feet are still swollen after 13 hours on bus..I am still recovering from the trip and came to have a quick check on this site.

I had an excellent time there meeting friends from this site and seeing you guys in real life makes it even better. It is sad when the time comes for us to go on out separate ways back home. Miss you all 

It means for 30 hours we are a ship with out our captain  Hurry back home captain,we are trying to sail as smoothly as possible  .

Zaini.

Thank you for your tireless efforts Nur, I think our members gained a lot from this conference! 

Aye aye captain Andy, we are eager to have you back on board!! 

Sharmin

Hi everyone,

I am back and as you may see, I jumped right back into posting. I will make my reports as I have time, but as always, important issues like helping Tariq will always take precedence. I feel the conference had some weaknesses, but to be fair, if you work, you get rewards. I worked very hard at the conference and and was rewarded in many ways, from arranging desferal exchanges (YAY!) to making contacts with many patients, parents and company people. I also got to know some of the doctors better and was quite pleased to see that Dr Piga remembered me from Dubai. I think Dr Wood did also, and I was quite honored to meet Dr Marwaha. The more people I know, the more people I can help. 

One thing that has come up as a result of meeting Bob Ficarra who is past president of TIF and CAF, and on the boards of both, is he asked me to join the Cooley's Anemia Foundation. He pointed out that it would in no way affect the independence I enjoy in this group, but it could also work to advance my efforts.

I would like to ask what our members think about this. I have always had great respect for CAF and Lisa's mom has run the local branch for many years. What do people think? Can it benefit us and are there any pitfalls of which I should be aware. Especially if you have experience in thal associations, what do you think? If I do join, it could lead to me being more involved with the orgs. Is this good or bad? Please be frank and honest if you think there are negatives involved. I do feel that there may be some benefit to joining, especially in terms of enhancing the legitimacy of our group, which should result in us helping even more people.

Andy,

I don't know much about thal associations,but i don't think any thing bad will come out of you joining CAF,it's just that you'll have to devote more and more time,and you are already doing a lot for this group.

If at any stage you feel like it's compromising the independence of this group,you can always leave CAF,can't you?

Zaini.

Hi all, i came back yesterday.. but was quite tired that dint have a chance to check what was going on in the site until now.. Andy is right, the conference had it weaknesses, but it depended on how you worked around those...  so for me it was quite informative and beneficial... I made lots of contacts with so many thals from many countries, and also made contacts with doctors and was able to clarify everything i needed.. (thank you Andy, for helping me find the doctors i needed). There was one time the regulations and rules abt not letting us enter was so frustrating (on day three) that i was close to tears of anger. However, by talking (with Kymn and some other organisers,) i was able to get in for all the sessions i wanted. So, thank you Kymn, for making it happen..

I loved meeting Andy, shilpa and simran again... manal, puja, mariam, nur, miaki (am i missing anyone?) for the first time.. it was so great to see u all. Btw, i had such a lovely time with Andy, shilpa and simran on the last night of the conference. Thanks guys:D … I wish I had met many more of you guys there,… hopefully, next time

I hope to share with you all what i learnt and will also post pictures as soon as possible.. this may take sometime, coz im in full swing into my studies which are close to the finals for this sem :S

To answer your question Andy, I think its good to think about it really well before making a decision. Like you said, it has many advantages, one of it being legitimacy to this group.. However, please be careful of beurocracies which might not allow you to do things freely as you are doing it now. Joining some association shoudnt mean that anyone can tell you how and when and to whom you can, lets say for example, send desferal. Or that you have to get someone else's approval first, to do things WE or OUR GROUP think is right. Another experience i had with associations sometimes (not only thal, but any) is that people who are opinioned and tries to get things moving and changing for the better are silenced by allowing them a place in thier associations that they cannot refuse with lots of benefits (strings attached most of the times... )... so do be careful and think about all this before you decide something.

I wish i had some extra time to post after i came back but my new work is pulling me away from this site  Thinking back, this event was good in terms of meeting people rather than the informations that was gained. I my own occasion, this is a good place to help others too. 

Andy,
 My worries if you join CAF is that you might not have enough time for this site and Coolies anemia is only affected to a certain group of people only (forgive me if i'm wrong). Thal in the other hand is a lot more common and i think concertrating in this site can help a lot more people.

Yes Nur, CAF is a US organization and we are international here in our group. In fact, Bob Ficarra was surprised the people he knows had never mentioned me and I told him that we are international with a heavy emphasis on Asia (not to exclude anyone). If this was anyone else, I would say no harm in joining, but being that it is me, who never seems to know how to say no to people who need help, I do have to be careful with my decision because it might get me so involved with yet another task.

Andy  i think joining the CAF won't harm especially that they can sponsor your visits to conferences and as Zaini said you can leave anytime if things did not turn to be good

manal

Andy,

I agree.  Since this is your passion and you have the potential to truly make a difference you should consider the opportunities presented to you in Singapore.  You are already working so hard, it would be great if you are given more resources through these groups to do what you do. 

I have never seen anything stop you from doing what you truly believe in, I don't think that your role in these groups will be able to stop you.  You can also let them know ahead of time what additional priorities you currently have, and that you are not going to compromise on them.  The only thing you need to consider is how much more you can take on, if this opportunity is meaningful and special to you we will all do what we can to help and support you. 

Sharmin