Events happening for Thalassaemia Day

Hi Everyone,
I have been trying to do some research on events happening internationally for Thalassaemia Day. The only one I came up with is an Iron Warriors Contest which allows thalassaemia patients internationally up to age 16 to take part. Each entrant has to submit his/her drawing or painting and the best 12 submitted are compiled to make a thal calendar which is then circulated around the world.

Does anyone know of anything else happening?
thanks

Each year we have a thalassemia international conference in Cairo/Egypt that is held on the 8th and 9th of May. Most prominent professors are invited in this conference to discuss all topics related to thal

Manal

Manal,
Thanks a lot for the information. I hope that there is more activity out there.
It would be fantastic if there is something happening in every country for that day, dont you think?

Thalassaemia Society of Victoria

Free Educational Presentations
to secondary students and community groups
now taking bookings for 2008.
 
Presentations offer an introduction into genetic conditions, to coincide with the current science/health syllabus as well as providing students with the perspective of someone living with the condition, such as thalassaemia.
 
To book a presentation simply call our office
on 1300 300 318 or (03)9888 2211
alternatively you can email us oninfo@tsv.org.au

Thalassaemia Singapore

International Thalassaemia Day 2008 is on 8th May 2007! In conjunction with KK Women's and Children's Hospital, there will be a blood donation drive and thalassaemia educational talks in KKH Training Centre! Be there!

Hello Sammyjoe,

The Thalassaemia Society of Victoria offers free education presentations to all secondary schools within Victoria Australia. They have a community educator that goes out to schools that specifically talks to Yr 10 to Yr 12 students (students between the ages of 15 and 17) about what thalassaemia is , carrier status and the outcomes of carrier couples. They also talk about becoming blood donors, as thalassaemia major patietns use a high quantity of blood stores. its nice if u can raise the awareness of thalassaemia and at the same time raise the awareness of the importance of becoming blood donors.

These presentations are all year round, so they are not specifically set for Int Thal Day May 8th.

Miaki

Hi Miaki,
thank you for the clarification. I have been trying to do research on possible events with the hope that most of the members might be spurred towards instigating something for the day in particular in their own country/ area. From the links and threads I have noticed that we have members internationally on this forum on a daily basis. Being able to support and also help each other can do a lot for a cause such as this, dont you agree?

I feel that being out there can make a world of difference to everyone. Do you know that a lot of people are still not aware of the condition, let alone its treatment. Personally I have not suffered or endured what the actual patients feel and most of my knowledge comes from my friend who is a patient in my class but I do feel that it is important to stand out and make others aware of Thalassaemia and its international day.

This is why I was hoping to get activities planned for this years event listed so everyone would have known what is happening on that day and even spread the word around in their own country. this way people would understand that its not just 10 patients in macedonia, or 40 in New york but over 250,000 patients internationally!

I know that I am rambling but I am so worked up about this as well.
thansk for listening
Sammy

Hi Sammyjoe

Good to hear from you and I am all for your way of thinking, we need more and more people like you.

Where are abouts are you located? Would love to liase with you re: promoting thalassaemia

Your friend is very blessed to have such a wonderful friend like you.

Keep up the good work.

Miaki

Hi Miaki,

Thank you for your nice words.

I live in Orlando now, just having moved from New York. I really do want to get people to understand and appreciate some of the other problems existing in this world. I I continue to pray that a remedy or cure will come soon.

When I listen and read to some of the problems faced by most patients I want to reach out and shake the powers that govern into listening as well.

We do need to get more attention so that something is done. Everyone I have spoken to , since finding out about Thalassemia, seems to think that it only affects a few people so its no bigee.

I'tl Thalassaemia Day will be held this year in May in Kuala Lumpur Malayisa. I don't know the details yet but it's going to be a 4 days event.

Will update when i got the details.

In USA, TAG conference is in Washington, DC from 8-11 May 2008

More details can be found at :- http://cooleysanemia.com/sections.php?sec=357

Hi all,
I recently heard about a big event undertaken by the Colleys anemia Foundation. This year it was held in New York at the Tavern on the Green and had a huge amount of patrons. I was not lucky enough to attend it but was happy to hear that it seemed to be successful. the main thing that struck the person attending was the lovely presentation done by the parents and patient in conjunction with the foundation. It showed that the organisers really did the home work and knew what would have worked best in their instance.

It may not work in every country but their idea was fantastic, find established individuals and get them to understand the condition and the treatment. Then get them involved in the actual "marketing" of the tickets and fund raising part. This promotes awareness as well as helps with funding needed for everything else.

Hats off Cooleys , Frank Somma and the celebrity Chazz Palminteri who went all out for this.
Great job!!!!

In USA, TAG conference is in Washington, DC from 8-11 May 2008

More details can be found at :- http://cooleysanemia.com/sections.php?sec=357

Anyone attending the TAG conference in Washington DC this weekend? Even though it shows the conference is for 3 days, Saturday is the day when most of the agenda is. Obviously, it is good to meet others at the conference if someone can make it for 3 days.

The agenda includes Gene Therapy, Chelation Panel, Comprehensive Care, TCRN/NIH (Don't know what that means), Cardiology Panel and the List of Invitees include Dr. Ellis Neufeld (Boston Childrens Hospital), John Wood (Childrens Hospital LA), Robert Grady(Cornell Univ), Michel Sadelain(Memorial Sloan-Kettering), Sujit Sheth(Columbia Presbyterian - who I think will talk about Ferriscan and MRI)

For more details on conference agenda:- http://brucerod.com/tag/conference/2008/TAG_Conference_Agenda_2008.pdf

I'm surprised this conference isn't publicized more. No one from TAG has even mentioned it here.

There's going to be Thal. Day celebrated (I'm not sure if this is the right word for it) here in Rwp/Isl. at Pakistan Institute of Medical Sciences (P.I.M.S) with the collaboration of  Jamila Sultana Foundation and other Thal. Centers of the city.

Agenda will be as usual (progress of treatment and care facilites and musical performances by kids).

The chief guest will be Federal Health Minister Ms. Sherry(Shehrbano) Rehman

I was going skip this event as it's going to be the same old speeches again with no improvement regarding new innovations in technology like FerriScan, issues regarding the price of Asunra, availibility of Desferal, nothing about the awareness among population and social wellbeing of Thals.

Plus I have a sufficient dose of kids rattle every week when my nephews visit

UNTIL I receive a last minute call from JSF. Telling me to be the Chief Guest representing them

I don't have the slightest idea what I will do there. The only thing they told me is that they want to know about this site and how am I contributing as a rep of JSF and Pakistan

I think this is a great opportunity for drawing more attention of the doctors (and hopefully the health minister) to see what is going on around the world regarding Thal. and where Pakistan stands.

I need all the tips from everyone here so that I could tell them to at least visit this site once and see the innovations in the treatment and management of Thal. worldwide. I would really like them to know about FerriScan, rejection of the stigmas associated with Thal. and how our older members are living a perfectly normal healthy life.

Andy,

Will it be o.k if I register a short redirecting URL to the site as I have noticed that with our current URL people tend to get confused with the plurals involved and the British and American spelling of Thal. I want to give out the URL to everyone that I meet

I think I will go for something like "thalsite" I will find a suitable service and send you a PM about it.

I wish I had our JSF site completed BUT NOOOO my project manager is too busy doing other things. I have the site half uploaded for about 6 months or so with all the blanks ready to be filled by him.

Edit: I've registered makethal.better.ws Try it out and share it with your friends and family!