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

Thal at Cal: Nutrition DeCal, by Mohith Subbharao

Mohith Subbharao

For any person, nutrition and exercise are necessary to maintain a healthy lifestyle and succeed in all aspects of common day-to-day life. For someone with Thalassemia, these things are even more imperative. Without proper nutrition and regular exercise, the symptoms of Thalassemia patients will only get progressively worse. However, if Thalassemia patients can make extra efforts to dramatically improve their nutritional intake and exercise habits, their symptoms may actually become less severe than the average patient.

Dr. Ellen B. Fung, PHD RD CCD is an Associate Research Scientist at the Children’s Hospital & Research Center, Oakland. Through her research, she has discovered a vast amount of information that all Thalassemia patients should know. There are several nutrients humans need every day to maintain a normal lifestyle. Dr. Fung’s research has found that Thalassemia patients are often deficient in many essential vitamins (Fung Lecture Slide 8). To combat this, Dr. Fung advises patients to take multivitamin supplements daily. Fung also stresses the importance of taking extra Vitamin D and not taking any iron supplements (to avoid further increasing chance of iron overload). She adds that many Thalassemia patients suffer from low bone mass and that additional zinc supplements should be taken to help combat this.

In addition to her research on nutrition, Dr. Fung has also stressed the importance of physical activity. She has found that “exercise capacity is reduced in Thalassemia patients, due to anemia and iron-mediated cardiotoxicity” (Fung Lecture Slide 46). Because of this, she advises that Thalassemia patients should work even harder to make exercise a regular habit. With exercise, patients can help maintain body weight, increase bone mass, improve mood and decrease depression (Fung Lecture Slide 44). Obviously, Dr. Fung understands how tough this may be so she advises patients to work their way up. She believes that “patients should start with small attainable goals, work up to 30 min/day 5x/wk…make it fun and something they can stick to” (Fung Lecture Slide 55).

Thalassemia is a disease that patients have to deal with throughout their lives. However, if they can follow Dr. Fung’s advise on nutrition & exercise, they can significantly improve their day-to-day lifestyle and make the effects of Thalassemia less severe.

All information about Nutrition & Exercise is summarized from Dr. Fung’s lecture, “Nutrition & Exercise”, given at the Thal At Cal Decal course on October 6th, 2014. .

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Mohith Subbarao is a student in the Fall 2014 "Thal at Cal" DeCal on thalassemia. This article is his independent project for the course.