Susan Carson Talk – YouTube
June 29, 2015 Leave a Comment
Dr. Coates Talk – YouTube
June 29, 2015 Leave a Comment
Dr. Coates Talk Slides
May 3, 2015 Leave a Comment
For those you weren’t able to attend our 6th TSF Conference at CHLA, we are posting Dr. Coates Talk Slides. Enjoy!
6th TSF Conference at CHLA – April 18th
March 1, 2015 Leave a Comment
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.
| 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
January 24, 2015 Leave a Comment
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.
Thalassemia App
January 24, 2015 Leave a Comment
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/
Welcome
June 30, 2013 Leave a Comment
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!
Thalapedia Goes Live!
June 30, 2013 Leave a Comment
The Thalassemia Support Foundation is proud to announce the launching of a new site to help provide information to the Thalassemia community. Â 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
June 30, 2013 Leave a Comment
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. Â 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.â€
 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
March 30, 2013 Leave a Comment
PDF of Invitation: 5th Thalassemia Support Foundation Conference Invitation
5th Thalassemia Support Foundation (TSF)Â Conference
Saturday -Â April 20, 2013
Children’s Hospital Los Angeles (CHLA)
4650 Sunset Boulevard
Los Angeles, CA Â 90027