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Welcome

The Thalassemia Support Foundation (TSF) is a non-profit organization that was founded by patients, parents, and friends affected by Thalassemia. Our primary goal is to help improve the quality of life for all patients with this terrible disease. And with your help and support, we can make that a reality!

6th TSF Conference at CHLA – April 18th

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

Project Violet

The scientists at Project Violet are creating a new category of drug candidates specifically for rare diseases. These peptide drug candidates are 10-20 times larger than most drugs, which make them ideal for interacting with the proteins that cause most diseases that are currently considered incurable. The team set a goal of reducing the cost of drug discovery by 10-fold and reducing the time from screening to human trials by 5-fold. You can help this team simply by watching the following music video, which underscores the importance of this work. A generous family will donate $1 per view up to $100,000 to create resources for scientists working on various rare diseases.

http://www.youtube.com/watch?v=edM6rZuyxtc

Thalassemia App

Curatio and the Thalassemia International Federation, created a free private mobile social networking app for Thalassemia patients called ThaliMe. This app connects patients with each other through a specific matchmaking process, allowing them to create their own network of Thalassemia patients of their own choosing. There is also a medtracker feature on it with all the Thalassemia medications! Please check it out and share it with your fellow Thalassemia friends.

You can download it here: https://itunes.apple.com/us/app/thalime/id934541183?mt=8

Or find out more information here: https://curatio.me/thalime/

Thalapedia Goes Live!

The Thalassemia Support Foundation is proud to announce the launching of a new site to help provide information to the Thalassemia community.  Thalapedia is a website created to provide information for patients, families and friends of individuals affected by Thalassemia. Our goal is to help provide context and some perspective to a lot of the information posted online. We hope that you will find the information to be useful and current.

www.thalapedia.org

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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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