Congratulations on the fabulous new web site

Hello,

My name is Gina Cioffi and I am privileged to serve as the National Executive Director of the Cooley's Anemia Foundation based in New York City.  If anyone needs any information or wants to learn more about our services please check out our website - www.cooleysanemia.org.  Or feel free to contact us by phone.  We recently moved offices and our new contact information is:  Cooley's Anemia Foundation, 330 Seventh Avenue, New York, NY 10001 phone 212 279-8090 or 800-522-7222. 

Lisa's family continues to raise funds through the Rochester chapter of the Foundation.  Their support for our patient and medical research programs has been tremendous and we are delighted that this support website continues to honor Lisa's contributions and interest in improving the care of patients worldwide.

Sincerely,

Gina Cioffi

Hi Gina!  I'm so glad you joined!   

Hi Gina,

Is there a way to order the red Cooley's Anemia bracelets?

Michele

Hi Michele,

I have the bracelets for sale if you'd like me to send you any.  They are $1.00 each.

If anyone else would like a rubber Thalassemia bracelet (like the Livestrong ones, only red in color), I have about 40 left, so let me know. 

Hi Danielle,

I am interested in getting some for my family and friends, just tell me how to send you the money.

thanks!

Michele

Hi Danielle,
I am interested in getting some for my family and friends, just tell me how to send you the money.
thanks!
Michele

Michele, are you registered with PayPal (www.paypal.com)?  If not, would you be able to send me a check?  How many bracelets do you want?

Hi Danielle,

I do have a paypal account.  Let me know what I need to do.  I'd like to take 10 bracelets.

thanks,
Michele

Ok, Michele.  I'll private message you, and we'll work out the details.   

What do these Bracelets do? I mean, are they the "Magnetic Bracelets" used by people of "Alternate Therapy"? or just a fashion accessory?

Don't know what I am talking about? Well, I will tell you another Story of the therapies in developing countries!

One day I was watching tv and while channel surfing, I found this very famous "Alternative Therapies" (Such as Meditaion, Color, Yoga, Magnet, Pressure Points :blah ) expert nicknamed "Yogi" giving an introduction to "Magnetic Thrapy". He claimed that these Magnetic braclets effects the blood flow by interacting with iron in Heamoglobin and thus curing various diseases such as muscular/joint pains, cramps etc. He also showed a Magnetic Waist belt that can cure various organs like a sick liver to make blood and stimulate the Pancrease to treat Diabetes etc.

This also reminds me of another story that there is a Homeopathic Doctor near our house. One day he told me to take some Balm (Balm is a Jelly like substance with lots of menthol and other stuff used extrenally to cure muscle cramps, headaches, cough and cold etc). Anyway, he told me to take some Balm and rub it on a particular pressure point on the liver and then message the palm of my hand (again some pressure point). He said that this will cure your liver and you won't need blood trasnfusion again!

One important point I noted that, like most people in this region they beleive that the Liver is responsible for making Blood. They don't have the slightest knowlege that it is the Stem Cells in the Bone marrow that has this job. Although this is true that if the liver malfunctions, the blood counts are also effected(Danielle you are a Med Pro, you should know better than me, what really the case is), but it is totally wrong that "Liver makes Blood!", well this is what I think! Tell me what you guys think, I'd like to hear from everyone on this one!  :wonder

What do these Bracelets do? I mean, are they the "Magnetic Bracelets" used by people of "Alternate Therapy"? or just a fashion accessory?

Sajid, they're not the magnetic ones.  They are rubber Thalassemia bracelets, like the yellow "LiveStrong" ones they have for Cancer.  This is what they look like ...



If anyone would like to purchase them, they are $1.00 each, and all proceeds go to the Cooley's Anemia Foundation.  Just let me know. 

Well, Sajid, one thing that I know for sure, is that the liver is responsible for clotting factors, and when the liver malfunctions, the clotting mechanism also malfunctions, which will eventually lead to severe bleeding.  This, in turn, will cause the blood counts to drop.  Maybe that's why they think the liver has direct responsibility for making blood, which is indeed false.   

Our infamous Dr Ghulam has also often made the claim that thal is caused by the liver and that the bone marrow has nothing to do with. But he has also told me that there has never been a successful bone marrow transplant, in spite of the fact that bmts are being done regularly and successfully in many centers around the world. The worst thing about these "healers" is they give people false hope and get them to squander their precious funds on a fraud. One more reason we need to make enlightening people about thal a daily habit.

Ok, I don't know how I'm going to explain this, but I'm going to try.  Thinking back to nursing school, there is actually a way the liver can be involved in the production of red cells.

Bare with me ...   

When our bodies become hypoxic (lack of oxygen), a hormone is stimulated primarily by the kidneys in adults, called Erythropoietin.  This hormone then stimulates the marrow to produce more red cells. Some amounts of this hormone is also produced by the liver in adults.

The liver is actually the primary site of red cell production in the fetus, until the bone marrow takes over.   So, in actuality, the liver plays a small part in this in adults, but a huge part in the fetus.  So, it really doesn't have a direct responsibility for the production of cells in adulthood.

I know, it's very confusing.   

The liver is actually the primary site of red cell production in the fetus, until the bone marrow takes over.   So, in actuality, the liver plays a small part in this in adults, but a huge part in the fetus.  So, it really doesn't have a direct responsibility for the production of cells in adulthood.

I know, it's very confusing, but it's true.  

But in our case the HB genes are faulty. It doesn't matter how healthy the liver is or how much Erythroprotein our kidneys make. The bone marrow will produce more of that blood with faulty HB if we take Erythroprotein shots that are available in the market. Right?!?! 

Exactly, Sajid.  We will just continue to make faulty cells, no matter how much the erythropoietin is stimulating the marrow.