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6th TSF Conference at CHLA – April 18th

Update (5/3/15): Dr. Coates Talk Slides

6th Thalassemia Support Foundation (TSF) Conference

Saturday –  April 18, 2015

Children’s Hospital Los Angeles (CHLA)

4650 Sunset Boulevard
Los Angeles, CA  90027

This conference is FREE to all attendees.

Please RSVP by April 12, 2015

RSVP to Kelly Russell by calling: 323-361-3269 or emailing: krussell@chla.usc.edu.
In your phone message/email, please include the full name(s) of each attendee, as well as a phone
number where you can be reached. Also, please include the ages of those under 18-years-old.

Space is limited and an RSVP is mandatory.

If you do not RSVP, there may not be space available to you at the conference.

Schedule of Events
9:30 – 10:00 Registration and Light Refreshments
10:00 – 10:15 Opening Remarks
Paul DiLorenzo, PhD – TSF President
10:15 – 11:15 Standards of Care for Thalassemia
Thomas Coates, MD – Children’s Hospital Los Angeles
11:15 – 11:30 Break
11:30 – 12:30 Transitioning from Pediatric to Adult Care
Susan Carson, MSN, RN, CPNP – Children’s Hospital Los Angeles
12:30 – 12:45 Sanguine BioSciences, Inc.
Kristen Warren, Director of Clinical Operations
Arnaldo Salazar, Marketing Coordinator
12:45 – 2:00 Lunch
2:00 – 2:30 Bluebird Bio
Alexandria Petrusich, Director of Clinical Operations
2:30 – 3:45 Panel Discussion: Coping with Thalassemia
Moderator: Laurice Levine, MA, CCLS – Children’s Hospital Research Center Oakland
3:45 – 4:45 Breakout Session
Patients, Parents and Significant Others
4:45 – 5:00 Closing Remarks
Paul DiLorenzo, PhD – TSF President
Children’s Session will be available

Recap of 5th TSF Conference

It was exciting to see the objectives of the Thalassemia Support Foundation being realized in a very tangible way during the recent conference at Children’s Hospital Los Angeles.  The evolving theme throughout the conference was how to better manage your health and family life, i.e. improve quality of life while living with thalassemia.

Doctor Thomas Coates was excellent in his explanation of thalassemia and the importance of complying with the individual’s medical requirements.  He acknowledged the difficulty in complying, yet noted that when the patient complies with medical care, life expectancy is projected to be long and productive, versus a median age of fifteen, which was the case in 1970.

An individual’s story is a profound way to give back to the community.  The panel, consisting of patients and a parent, told their stories of struggles, despair, challenges, and triumphs.  In each life story, it was clear that having thalassemia added another very significant layer of complication on ones life.  Yet through the help of community and knowledgeable medical professionals, each panel member talked about becoming stronger in their uniqueness and excelling in life.

Community gives strength and shared knowledge. The separate groups of patients and spouses, and parents and family provided excellent opportunities to share experiences in a very real and helpful way.  It cannot be said better than Lance Sevier, a father, said in his note to the board.

“The opportunity to talk with, and ask questions of, other parents was wonderful. I think I learned the most from the real life experiences of patients and families … shared with such honesty, openness, and tears. Our 4 year old daughter, Hannah, has a long and productive life ahead of her and we are better able to support her because of all we have learned.”

 Thanks to all who participated and attended.  It was great to have representation from the Sickle Cell community and from California Public Health.

5th Thalassemia Support Foundation Conference

PDF of Invitation: 5th Thalassemia Support Foundation Conference Invitation

5th Thalassemia Support Foundation (TSF) Conference

Saturday –  April 20, 2013

Children’s Hospital Los Angeles (CHLA)

4650 Sunset Boulevard
Los Angeles, CA  90027

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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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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.

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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Dr. Elliott Vichinsky: Comprehensive Medical Care in Thalassemia

During the conference we captured Dr. Elliott Vichinsky's Powerpoint presentation as well as the audio. View his presentation! **A Java enabled web browser is required! Read the rest of this entry »

Dr. John Wood: Pulmonary Hypertension and Good Cardiac Care

During the conference we captured Dr. John Wood's Powerpoint presentation as well as the audio. View his presentation! **A Java enabled web browser is required! Read the rest of this entry »