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4th Thalassemia Support Foundation Conference

PDF of Invitation: 4th Thalassemia Support Foundation Conference Invitation

4th Thalassemia Support Foundation (TSF) Conference

Saturday –  October 6, 2012

Children’s Hospital Oakland Research Institute (CHORI)

5700 Martin Luther King Jr. Way
Oakland, CA  94609

(Down the street from CHRCO) 

  Important Note

Another Conference will be held at the Children’s Hospital Los Angeles in April 2013, which will cover the same topics and may have the same speakers/sessions as this conference. 

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Shades of Gray

by Marientina Gotsis

I was born with beta thalassemia trait. My father carries the gene. My brother carries the gene. Half of my dad’s family also carries the gene but my parents did not know my father had thalassemia until they had to test in order to get a marriage license. This was before separation of church and state in Greece and the church required genetic screening. The mystery behind my father’s endless craving for steak and sleep was solved.

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2011 Thalassemia Action Group Conference at Disneyland

TAG Patient/Parent Conference
Disneyland Paradise Pier Hotel
Anaheim, California
June 24 – 25, 2011

A unique way to gather important new information about thalassemia while meeting other patients and parents who can relate to the specific challenges associated with thalassemia.

For more information, visit: http://tinyurl.com/4doxrhb

Thalassemia Informational Session at Ceders Sinai Hospital

The information may be very important for you, particularly if your family originates from the Mediterranean Region, North Africa, Turkey, the Middle East, India, Asia and New Guinea.
Dr. Vasili Berdoukas, an international expert on thalassemia and related disorders will present information on the condition, how it is inherited and prevented.

Cedars Sinai Hospital Harvey Morse Auditorium
Tuesday, May 24th 2011 between 7-9pm
Free of charge. Refreshments will be served. All welcome.
Seating Limited – RSVP requested.

Flyer

3rd Thalassemia Support Foundation Conference

The 3rd Thalassemia Support Foundation Conference was held at the beautiful Beverly Garland hotel located only a mile away from Universal Studios. This conference is directed toward Thalassemia patients, parents, and loved ones, as well as members of the medical community. The focus of the conference is to learn about recent advancements in Thalassemia care and to provide a unique opportunity to meet others who are affected by Thalassemia.

From a Parent’s Perspective

by Vincie DiLorenzo 

Paul was diagnosed with thalassemia major when he was four months old. At that time, he looked pale, but otherwise appeared to be healthy. Blood tests would prove otherwise.

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TSF Visits the Lotus Festival

On July 14th, 2007 members of our group attended the Lotus Festival at Echo Park in Los Angeles. This event is held every year free to the public to bring entertainment and public awareness of many community services that are available to them.

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2nd Thalassemia Support Foundation Conference

Over 90 patients, parents, loved ones, and members of the medical community attended the 2nd Annual Thalassemia Support Foundation Conference held on April 21st, 2007 at the beautiful Beverly Garland hotel located only a mile away from Universal Studios. The conference was directed toward Thalassemia patients, parents, and loved ones, as well as members of the medical community. The focus of the conference was to learn about recent advancements in Thalassemia care and to provide a unique opportunity to meet others who are affected by Thalassemia.  Guest speakers were Nancy Sweeters (CHO), Dr. Elliott Vichinsky (CHO), and Dr. John Wood (CHLA).

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Conquer Palomar Bike Ride

Cyclysm Adventures generously contributed $500 from the companies inaugural ride, Conquer Palomar. Over 130 riders participated in Conquer Palomar, Palomar Mountain’s first organized ride. Read the rest of this entry »

Iron Overload: Extremely Harmful, but Preventable!

by Titi Singer, MD
Hematologist
Children’s Hospital and Research Center at Oakland

Treating severe forms of thalassemia with regular blood transfusions has been an important advance in the management of thalassemia over the past 30 years. Transfusions are given in order to correct anemia (low hemoglobin level) and minimize the other clinical manifestations of the disease, such as bone changes and enlarged liver and spleen. In order to accomplish these goals, most patients require blood transfusions every three to four weeks with a blood amount of 10–15cc/kg (approximately two to three units of blood).

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