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

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. .

---

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

Children's Hospital Tour - A Student's Experience, by Mohith Subbharao

Mohith Subbharao

A few weeks ago, I had the chance to tour the Children’s Hospital Oakland, specifically the Thalassemia
Comprehensive Center. It’s not how I usually spent my Friday afternoons, but it was without a doubt a worthwhile experience. I left the hospital in awe of the hardships that Thalassemia patients go through and inspired by the doctors who have worked to help with these hardships.

I had never heard of Thalassemia before coming to UC Berkeley, and only learned about it by scrolling through the numerous “decals”, courses taught by students, offered at Berkeley this semester. Now I am shocked that I had not heard of this disease, especially since affects so many people around the world in such a harmful and long-term way. Touring the hospital and seeing children and their parents really made me respect everything they are going through. Along with dealing with the daily stresses of common-day life, they also have to learn how to survive with a disease that makes common-day life so much more aching and stressful. With such a complicated disease, there is so much these patients have to worry about: blood transfusions, iron overload, bone deformities, practical health issues, psychosocial problems, and much more.

That is where Children’s Hospital Oakland plays a huge role. It is amazing that the hospital has all the aspects needed to make the lives of Thalassemia-diagnosed patients livable. A patient doesn’t need to run around to several different hospitals to manage all the wide-ranging issues of Thalassemia, especially when those hospitals may not be very informed on the complexities and nuances of the disease. Because the services provided by Children’s Hospital Oakland are disease-specific, the doctors there genuinely care about their patients. If only more hospitals sprang up across the country following this model, we could better combat the disease known as Thalassemia.

---

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

Perspectives Newsletter

The new Summer/Fall 2014 edition of Perspectives, the newsletter of the Northern California Comprehensive Thalassemia Center is available as a PDF and can be read online here.

If you would like a free print subscription to Perspectives, please contact Laurice Levine: Llevine@mail.cho.org or sign up online.

28th Annual BBQ Steak Dinner to benefit the Cooley's Anemia Fund

28th ANNUAL BBQ STEAK DINNER

SPONSORED BY

ICF Branch 108 

and 

THE SABATELLA FAMILY

for the

Italian Catholic Federation,

Los Angeles Archdiocese District

TO BENEFIT THE

COOLEY'S ANEMIA FUND

SUNDAY – JULY 20, 2014   4:00 P.M.

766 MONTEREY RD

SOUTH PASADENA

(626) 379-0629 / 372-7812

(CALL FOR RESERVATIONS AND/OR DIRECTIONS

by July 13th per favore!)

$25.00 PER PERSON

For 28 years we will have come together and enjoyed a great afternoon with FRIENDS and great food! Great Raffle too!

Heart 2 Heart Block Party April 26th

Dear EHI Committee Members and Community Partners,

On Saturday, April 26, from 10:00 a.m. to 3:00 p.m., Heart 2 Heart will be hosting a neighborhood celebration for the fourth anniversary of the program’s Mobile Health Van. Along with door-to-door blood pressure screenings, they will be offering several community resources, as well as hosting a  National Prescription Drug Take-Back Day, in partnership with the DEA office.

For more information about Heart 2 Heart and their Block Party, including the location of their event, please refer to the flyer attached to this e-mail.

Thank you!

Regards,

Camille Gonzales

Camille Gonzales

Interim Community Outreach Assistant

Ethnic Health Institute

3012 Summit Street, Third Floor

Oakland, CA 94609

510-869-8223

GonzalC92@sutterhealth.org

http://www.altabatessummit.org/ehi/

Are you looking for the perfect gift for your Valentine?

Do you have an hour to spare?

Would you like to Save a Life?

If you answered yes to any of these questions, then please consider donating blood in honor of Valentine’s Day? There is no better way to express love to  your Valentine than giving the gift of life.

There are four types of transfusable products that can be derived from blood: red cells, platelets, plasma and cryoprecipitate. Typically, two or three of these are produced from a pint of donated whole blood – therefore each donation can help save up to three lives.

For more information and/or to make an appointment to donate blood:

American Red Cross:

http://www.redcrossblood.org/donating-blood

Blood Centers of the Pacific:

http://www.bloodcenters.org

Thalassemia Patient and Family Conference 2014

The thalassemia patient/family conference held on January 18, 2014 at Children’s Hospital Oakland was a

success!  Approximately 45 patients, families and professionals attended to hear experts speak on the following:

---

Thalassemia Care and Research Update:
Elliott Vichinsky, MD
Children’s Hospital & Research Center Oakland:

---

Chelation:
Ashutosh Lal, MD
Children’s Hospital Research Center Oakland:

---

Health Insurance Update/Affordable Care Act:
Wendy Murphy, LCSW
Children’s Hospital Research Center Oakland:

Sabahat Rahman
University of California Berkeley:

---

Bone Marrow/Stem Cell Transplant/Gene Therapy:
Mark Walters, MD
Children’s Hospital & Reseach Center Oakland:

---

PHRESH Grant Update:
Lisa Feuchtbaum, DrPh, MPH
California Department of Public Health:

---

A children’s program for ages three and older was run by two Child Life specialists. Activities included developmentally appropriate teaching on thalassemia and health, medical play, and art projects such as sand art, picture frames and beading to name a few.

Conference attendees enjoyed lunch catered by Gira Polli of Mill Valley and dined al fresco.
Special thanks to our speakers for sharing their expertise.

We would like to thank our Volunteers:

• Sofia Dhanani
• Stacey Wong
• Kelly Stewart, MA – Children’s Program
• Nenna Okezi, MA – Children’s Program

Special thanks to Nancy Anderson and Apo-Pharma for making this conference possible.

Painted Turtle Camp 2014

Dear Friends of The Painted Turtle,

The Painted Turtle is thrilled to announce the re-opening of camp in 2014 and share with you the 2014 Camp Calendar!

We wish to thank you for your patience and support over the last several months as we’ve navigated our way back from the damage caused by the Powerhouse Fire. We know how disappointing it was to have a summer and fall without camp, but we learned quickly that camp is always alive in our hearts and that we can create the spirit of camp wherever we are. Camp on the Move proved this! 

We are happy to report that thanks to our dedicated and hardworking facilities crew all major remediation efforts at camp have been completed and over the upcoming months we will begin replanting our landscape.  Ground cover is already growing back, proof of nature’s resilience—and The Painted Turtle’s!

We know 2014 will be our best year ever as we celebrate our 10-Year Anniversary! That’s right The Painted Turtle has a big birthday coming up. We hope you’ll help us celebrate! 

Eligibility criteria for each session can be found here, as well as a PDF of the camp calendar here. Session specific information will be emailed as we begin recruiting for camp.

In addition, I wanted to share some happy news with you. I am expecting a baby in February! My last day in the office will be January 17th and I plan to return on September 2nd. In my absence, please refer to Donna Payne, Camper Admissions Coordinator. You can contact Donna at donnapayne@thepaintedturtle.org or 661-724-1768 x202.

2014 Camp Calendar                                

Spring (Now Accepting Applications!!!):

• Liver Disease and Transplant and Total Parenteral Nutrition Family Weekend:  February 28-March 2
• Special Diagnoses Family Weekend:  March 14-16
• Rheumatic Diseases Family Weekend:  March 28-30
• Inhibitor Family Weekend:  April 11-14

 Summer Sessions (Applications Available in January):

• Skeletal Dysplasia and Mucopolysaccharidosis: June 13-18
• Kidney Disease and Transplant:  June 22-27
• Special Diagnoses:  July 1-5
• Rheumatic Diseases: July 9-14
• Crohn’s and Colitis:  July 19-24
• Hemophilia/vWD and Thalassemia:  July 28 - August 2
• Liver Disease and Transplant, Primary Immunodeficiency Disease and Total Parenteral Nutrition:  August 6-10
• Sibling:  August 14-18

Fall (Applications Available in June):

• Primary Immunodeficiency Diseases Family Weekend:  September 26-28
• Asthma and Allergy Family Weekend:  October 10-12
• Rheumatic Diseases Family Weekend:  October 24-26
• Kidney Disease and Transplant Family Weekend:  November 7-9
• Spina Bifida and Paraplegia Family Weekend:  November 21-23
• Camper Holiday Gathering:  December 6

We look forward to seeing your patients back at camp in 2014!

Turtle Wishes,

Rosalyn Skelton

Camper Admissions and Database Manager 

The Painted Turtle

P.O. Box 455

17000 Elizabeth Lake Road

Lake Hughes, CA 93532

Phone: 661-724-1768 Ext. 203

Fax: 661-724-1566

rosalyns@thepaintedturtle.org

 www.thepaintedturtle.org

 

Thalassemia Patient and Family Conference 2014

A Day of Education and Fun... 

 You are cordially invited to a Thalassemia Patient and Family Conference.

When:

Saturday, January 18th, 2014 8:30 am

Where: 

Children’s Hospital & Research Center Oakland
Outpatient Center, Basement Floor, Auditorium
744 Fifty Second StreetOakland, CA 94609-1809 

 Topics Include: 

• Thalassemia Research & Care Update: Elliott Vichinsky, MD 
• Chelation Update: Ashutosh Lal, MD 
• Bone Marrow/Stem Cell Transplant/Gene Therapy Update: Mark Walters, MD 
• Medical Insurance and Affordable Care Act Update (Obama Care): Wendy Murphy, LCSW, and Sabahat Rahman (BS in Public Health and Molecular and Cell Biology-Neurobiology, May 2014) 

Children’s Program will be available for ages 3 years and older.
 Lunch will be served.

 Please respond by January 5, 2014 to:
Laurice Levine, MA, CCLS 510-428-3885, ext. 5427 or LLevine@mail.cho.org

 We hope to see you there!

Celebrate The Holidays In Outer Space!

Walk-with-a-Doc, Oct 19th in Berkeley

Did you know that walking as little as 30 minutes a day can help reduce the risk of diseases such as coronary heart disease, breast and colon cancer, and Type 2 diabetes? This simple exercise can also improve blood
pressure, enhance your mental well-being, and help you to live a healthier and wholesome life! That is why we at Walk with a Doc would like to invite you to the 1st Monthly Walk in Berkeley, CA where you will be walking alongside community members and medical professionals who are also looking to improve
their health.

Take out your sneakers and join us for a 2-mile walk around the city, and listen to our keynote speaker, Dr. Janet Berreman, MD, MPH, and Director of Health/Health Officer of Berkeley, who will talk about the importance of physical activity and nutrition. This event is FREE with blood pressure screenings, giveaways, healthy snacks, and a chance to win raffle prizes for all participants! Join us on Saturday, October 19th, 9am (registration and blood pressure screenings), 10am (health talk and walk) - 12pm, at San Pablo Park,
2800 Park Street in Berkeley. Walk-ins and pets are welcome!

If you would like to volunteer by helping out at the event, provide blood pressure screenings and/or give health advice, or would like more information about Walk with a Doc, please contact Mint Bhetraratana at
wwad.berkeley@gmail.com. Visit our Facebook page: https://www.facebook.com/wwad.berkeley and
website: http://www.walkwithadoc.org/our-locations/berkeley for more info.

We look forward to walking with you!

Mint Bhetraratana
B.A. Public Health & Integrative Biology 2013 | University of California, Berkeley
Thalassemia Outreach Intern | Children's Hospital & Research Center Oakland
(925)-451-1394 | (925)-276-2645 text | Cal Profile: https://cal.berkeley.edu/mint_b
Email: mint_b@berkeley.edu