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!
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.
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.
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/
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.
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
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)
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.
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.
TAG Patient/Parent Conference
Disneyland Paradise Pier Hotel
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
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.