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
Jul 1, 2015
Apr 17, 2015
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:
Mar 9, 2015
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 1st
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/
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)
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