Responsible Testing Study seeks participants

Recombine Research: Participate in the Responsible Testing Study

Recombine is a healthcare company focused on developing genetic tests that empower individuals and families. Genetic tests can only help families understand their risk for disease if the tests are able to accurately and dependably detect disease. The IRB-approved Responsible Testing study seeks to enroll individuals with known mutations (or changes in DNA) to verify that our genetic tests correctly identify the mutation. Participants receive a $20 Visa gift card.

To participate in the Responsible Testing study, we ask for your permission to use:

• a saliva sample
• your existing genetic test report

You are eligible to participate if:

• You have a confirmed clinical diagnosis with a causative genetic variation, or you are a confirmed carrier of a mutation, that we would like to validate on our tests.
• You are a member of a participating disease advocacy group or a patient at a participating clinic.
• You are at least 18 years old.
• You do not have a personal history of cancer, chemotherapy, or bone marrow transfer.

You can sign up today at recombine.com/responsible-testing.

For more information, go to www.recombine.com, or contact the research team at research@recombine.com

New: UCSF Center for Maternal-Fetal Precision Medicine

We are collaborating with The Center for Maternal-Fetal Precision Medicine, a trans-disciplinary program designed to improve our understanding and treatment of patients with congenital anomalies and pregnancy complications. We aim to integrate resources and talent between scientists and clinicians to accelerate research and clinical trials of fetal and neonatal interventions, create stronger bridges between basic research and clinical applications, and improve maternal, fetal, and neonatal care.

Visit their web site: 

www.facebook.com/UCSFcenterformaternalfetalprecisionmedicine

Thalassemia Nutrition Survey

A survey is being conducted by investigators at the UCSF Benioff Children’s Hospital Oakland.  Over the past 10 years it has become clear that patients with Thalassemia often have nutritional deficiencies. These deficiencies may be related to an unbalanced food intake. Unfortunately, accurate information on nutrition is rarely a topic of discussion during medical visits due to so many other issues that the patients want to discuss.

In order to better serve you (our patients), we have developed a survey to gather information on your beliefs about nutrition, where you get your nutritional information from, and who influences your decision making. The information gathered will be anonymous, therefore please answer truthfully. Your answers will not influence the medical care you receive in any way. This survey is intended for adults only (>18 or older). If you are a younger patient who would like to participate in the survey, please talk to your parent.

For those of you who complete the survey and are willing to share your email address with us, you will be automatically entered into a drawing for one of three $100 Amazon Gift Cards.
The Survey will be closed on Monday, July 20th, so please respond before that date!

Thank you for your participation!

Nutritional Attitudes and Beliefs held by Patients with Thalassemia Survey:

www.surveymonkey.com/s/thalsurvey

Kind Regards,

Ellen Fung, PhD RD
Associate Research Scientist
UCSF Benioff Children’s Hospital Oakland

Ms. Rammeet Kaur
Thalassemia Patient
CHORI Summer Research Student Intern
Doris Duke Research Intern Fellow 1

BAT Run 5K for thalassemia: Berkeley, Oct 31st

Thalassemia Patient and Family Conference: Seattle, May 9th

You Are Cordially Invited

Thalassemia Patient and Family Conference

When: Saturday, May 9, 2015, 9:00am – 3:00 pm

Where: Pan Pacific Hotel Seattle

2125 Terry Avenue, Seattle, WA 98121

Panpacific.com

Hosted By:

Topics Covered:

• Historical Perspective on Thalassemia and Chelation: Dr. Vasili Berdoukas, Children’s Hospital Los Angeles
• Iron Physiology and Alloimmunization with Transfusion: Dr. Sioban Keel, Seattle Cancer Care Alliance
• Gene Therapy Trials: Alexandria Petrusich, Blue Bird BioTech
• Children’s Program will be offered for children ages 3 and older.

Please RSVP by May 1, 2015:

Laurice Levine, MA, CCLS

LLevine@mail.cho.org

510-428-3885, ext. 5427

We hope you can join us!

Hosted by:

Sponsored by:

Genetically Inherited Illness: The Lived Experience & Role of Clinicians Speaker Series

 

The Office of Diversity & Inclusion

presents

Genetically Inherited Illness: The Lived Experience & Role of Clinicians

Speaker Series

DONOR POOLS & TRANSPLANTS in PEDIATRICS:

CLINICAL & ETHICAL ISSUES & ADVANCES

including THALASSEMIA with Dr. Mark Walters

with special guests  A Family Living With Thalassemia

Wednesday April 1 @ Noon

                             

Dr. Walters is a pediatric hematologist/oncologist with a career interest in hematopoietic cell transplantation for hereditary non-malignant disorders. He has established a national and international reputation in this academic area of interest. Dr. Walters has led the Blood and Marrow Transplant team at Children’s Hospital Oakland since 1999. He is also the medical director of our Sibling Donor Cord Blood Program. Dr. Walters' work is primarily with patients/families who have sickle cell anemia or thalassemia. A family living with Thalassemia will discuss their lived experience.

Date: Wednesday April 1

Time: Noon – 1:30 pm

Location:  3100 Telegraph MOB 4003 – Lunch for the 1^st 30 people.

6th Thalassemia Support Foundation Conference: April 18th, Los Angeles

Thalassemia Support Foundation (TSF)

in conjunction with Children's Hospital Los Angeles, 

cordially invite you to:

The 6th Thalassemia Support Foundation Conference

Saturday, April 18th, 2015

Children's Hospital Los Angeles (CHLA) 

4650 Sunset Boulevard, Los Angeles, CA 90027

with support from:

Cost & RSVP

This conference is FREE to all attendees.  However, space is limited.  

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

Conference web site: http://www.helpthals.org/blog/2015/03/01/6th-thalassemia-support-foundation-conference/

Please RSVP by Sunday, 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.

???Questions???

 

Thalassemia Support Foundation— helpthals@gmail.com

Kelly Russell (CHLA) — 323-361-3269; krussell@chla.usc.edu

Schedule of Events

(Subject to Change)

  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 - 2:00 Lunch 

2:00 - 3:30 Panel Discussion: Coping with Thalassemia

  Moderator: Laurice Levine, MA, CCLS - Children’s Hospital Research Center Oakland

3:30 – 4:30  Breakout Sessions

  Patients, Parents, and Significant Others

4:30 – 4:45 Closing Remarks

  Paul DiLorenzo, PhD - TSF President

  

A Children’s Session will be Available

(Excluding Lunch ~ Please pick up your children for lunch)

The 3rd Annual Bay Area Teen Science (BATS) College and Career Fair

  

All Bay Area Middle and High School Students are invited The 3rd Annual Bay Area Teen Science (BATS) College and Career Fairto:

A Day of Science, Technology, Engineering, and Mathematics Activities, Talks, and Demonstrations

Date:

Saturday Math 7^th, 2015 from 10:00 AM to 2:00 PM (Drop-In Anytime!)

Location:

Balboa High School

1000 Cayuga Avenue,

San Francisco, CA 94112

~FREE ADMISSION~

Attendees must be middle or high school students, or adults accompanying a student

Events: Extracting DNA from a Strawberry, Finding Exoplanets, Get Your CodeOn, Thalassemia-Invisible No More, countless DIY workshops, and much more!!

Bay Area Teen Science (B.A.T.S.) is a growing community that serves as the leading portal for community youth to Science, Technology, Engineering, and Mathematics (STEM) opportunities and resources for Bay Area teens. B.A.T.S. promotes learning, career building, collaborating, and networking for both audiences.. At this event, teens and parents can learn about growing STEM opportunities, current research revelations, and participate in fun hands-on activities. This is the perfect opportunity to come meet and discuss your interests with undergraduate and graduate students, researchers, and STEM industry and educational professionals and for youth to be exposed to various STEM fields and topics. 

One such topic is Thalassemia. Thalassemia is an underrepresented medical health issue that can only be tackled through the support of the community. Increased awareness of this serious condition has proven to facilitate research development. In their 45 minute presentation, Mint Bhetraratana and Caroline Levan of the Thalassemia Outreach Program at UCSF Benioff's Children's Hospital Oakland will discuss careers in research and genetics and talk about new research on Thalassemia, which is a genetic disease. This new research is pushing the frontiers of medical science and should not be missed! 

Hope to see you on March 7^th!!

Community Health Fair - Oakland - March 28th