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

Phi Delta Epsilon Blood Drive: October 8th at UC Berkeley

Thalassemia.com now on Social Media!

Please bookmark our new social media websites:

Dr. David Weatherall to speak at Children's Hospital Aug. 19th

Please join us to honor Sir David Weatherall, MD, who will be receiving the Wallace H. Coulter Award for Lifetime Achievement in Hematology. Dr. Weatherall will be visiting Children's Hospital Oakland on Monday, August 19th. He will give a lecture entitled "Inherited Hemoglobin Disorders: An Emerging Global Health Problem" at 5:00 PM in the OPC Auditorium followed by a reception in the OPC Atrium.

Public hearing on behalf of CREAM, tonight at 7pm in Berkeley

CREAM (CreamNation.com) - a Berkeley ice cream sandwich institution needs our help. CREAM has been a huge supporter of  the Thalassemia program at Children's Hospital Oakland in the past year: donating desserts to the Thalassemia holiday party, running a blood drive, and donating to the benefit concert at UC Berkeley.

Please read the attached letter of support and contact the Berkeley City Council in support of this issue.

mayor@CityofBerkeley.info , lmaio@CityofBerkeley.info , dmoore@CityofBerkeley.info , manderson@CityofBerkeley.info, jarreguin@CityofBerkeley.info, lcapitelli@CityofBerkeley.info , swengraf@CityofBerkeley.info, kworthington@CityofBerkeley.info , gwozniak@CityofBerkeley.info 

Thank you!

Laurice Levine, MA, CCLS
Thalassemia Outreach Coordinator
Department of Hematology/Oncology
Children's Hospital Oakland
747 Fifty Second Street
Oakland, CA 94609-1809
Ph: 510-428-3885 x 5427
email: llevine@mail.cho.org

May 2013 issue of Perspectives newsletter

The May 2013 issue of Perspectives is now online. If you would like a free print subscription, please sign up here.

Non-Transfusion-Dependent Thalassemia: new publications

 Guidelines for the Management of Non Transfusion Dependent Thalassemia (NTDT) has recently been published by the Thalassemia International Federation.

Also:  "Non-transfusion-dependent thalassemias", a review article in the June 1, 2013 issue of Haematologica.

World Thalassemia Day

Tomorrow, May 8th, is International Thalassemia Day. Children's Hospital Oakland has the largest Thalassemia Center in the United States, and is internationally recognized for its comprehensive care model and its leadership in thalassemia research.

The Northern California Comprehensive Thalassemia Center has collaborated with national radio networks to highlight International Thalassemia Day -- including USA RADIO NETWORK (National), WJSS-AM (Baltimore), WXBR-AM (Boston), LET’S JUST TALK (Syndicated), NORTHERN NEWS NETWORK (Montana Statewide), WHCR-FM (New York) / KDEE-FM (Sacramento), NORTH CAROLINA NEWS NETWORK (North Carolina Statewide), WAMV-AM (Roanoke), WDIS-AM (Boston), WYYZ-AM (Atlanta), WWTR-AM (New York), AMERICAN URBAN RADIO NETWORK (National), KPQ-AM (Seattle), EASY 96 ONLINE, WFIN-AM (Toledo), IT’S YOUR HEALTH (Syndicated), National Vietnamese radio interview (with Children’s Hospital resident Dr. Mylinh Nguyen). 

We would like to thank Dr. Mylinh Nguyen for her important contribution in educating the Vietnamese physician and patient communities.

We appreciate your support for the 12th Annual Children's Hospital Oakland blood drive for Thalassemia, and UC Berkeley's Thalassemia Awareness Day.  The blood drive will take place tomorrow (Wednesday) from 8am to 1pm (as coordinated by Laurice Levine) in front of the Children's Hospital outpatient center.   

Soon, Children's Hospital Oakland in collaboration with BluebirdBio will be initiating experimental gene therapy for E Beta thalassemia.  We look forward to curing this disease and improving the lives of those affected. 

Elliott Vichinsky, M.D.

Director, Northern California Comprehensive Thalassemia Center

Please come donate blood at the 12th Annual Blood Drive for World Thalassemia Day

Wednesday May 8^th: 9am-2pm Blood mobile in front of the OPC

A personal note from a thalassemia patient and a CHO colleague/blood drive coordinator:

I am 40-year old person with thalassemia – my life has depends on blood transfusions and I have received approximately 720 units of blood in my lifetime. If it were not for blood donors, I would not be writing this message.

Giving back and replenishing the blood supply so that people whose lives depend on blood can continue to be productive members of society, is a vital part of my life. 95% of the population will need blood in their lifetime.

This is my 12^th drive to honor World Thalassemia Day – I easily collected 50 units of blood in my early drives, but the past five years have been a challenge – I am not sure if it is that we can no longer use the OPC to hold the drives; an inability to advertise as much, or general lack of interest. Now it is a miracle if we collect 20 units of blood in a 5 hour drive. It is sad – and scary!

 A plea to CHRCO/CHORI Staff/Volunteers/Friends: please consider renewing your motivation to come and donate blood or if you have never donated please join us. Let’s collect at least 30 units in honor of every child and adult who needs blood to live.

There will be a raffle and prizes – and most of all you can walk away knowing you saved a life.

For an appointment to donate please go to www.bloodheroes.com

Click “Donate Blood” and enter Sponsor Code: LCHO

For questions contact Laurice Levine at 510-428-3885 ext. 5427 or by email at

LLevine@mail.cho.org

Thank you!

--Laurice Levine

New video about thalassemia and the Comprehensive Thalassemia Program at Children's Hospital Oakland

Volunteers are needed!

The Northern  California Thalassemia Center is looking for:

• Volunteers for outreach office administration or events.
• Writers for Perspectives and thalassemia.com.  (Have a story to share? Healthcare tips? We want to listen!)
• Fundraisers: The economy is a challenge.

We need to keep our program going. Please let us know if you want to help.
If you are interested, please contact Laurice Levine at LLevine@mail.cho.org
or call 510-428-3885, ext. 5427.