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APRIL 2018

Who we are:

In September 2017 HRSA re-awarded a five year regional grant to The Center for Inherited Blood Disorders (CIBD) to continue the Pacific Sickle Cell Regional Collaborative (PSCRC). CIBD and UCSF Benioff Children’s Hospital in Oakland (BCHO) are leading the PSCRC which engages expert Sickle Cell Disease (SCD) clinicians, health departments, Community Based Organizations, health professions associations, federal government partners, public health policy, and epidemiology in 13 states. To learn more about the PSCRC go to: https://pacificscd.org/ or http://casicklecell.org/.

Why a Newsletter?

Our goal is to engage, educate and link stakeholders locally, regionally, and nationally to join us to improve the health of Pacific Region patients/families affected by SCD.

Interested in sharing your updates in our newsletter? Email Shalini Vora at svora@c3dibd.org
 

Statewide Action: Sharing Knowledge - Locally, Regionally, and Nationally

The PSCRC's Project ECHO Sickle Cell Telementoring meetings have gotten off to a strong start in 2018. Project ECHO is an internationally recognized video-conferencing system whose purpose is to strengthen the skills of healthcare professionals in the care of people who have complex disorders. In March, the PSCRC hosted Project ECHO sessions on Splenic Sequestration featuring Dr. Anne Marsh from UCSF Benioff Children’s Hospital. All 2018 Project ECHO videos are being archived by the Center for Inherited Blood Disorders.

If you are interested in accessing past Project ECHO calls, click Here to register!

 

Community Updates

Sickle Cell Anemia Awareness of San Francisco (SCAASF) is a non-profit organization that came into existence in 2014 after the founder's son, Kareem M. Jones, passed away from SCD. The Mission of SCAASF is to broaden public awareness about SCD; its effects on quality of life and to broaden awareness regarding the deficiencies with access to quality care. SCAASF advocates for an improved healthcare system and a Sickle Cell Care Center in the bay area; and lastly, awareness about new therapies and legislation pertaining to Sickle Cell Anemia.



SCAASF held a blood drive on March 17, 2018. The blood drive was attended by 22 people, with 18 donating blood, giving a total of 20 lifesaving units! SCAASF, in collaboration with Blood Centers of the Pacific will host another Blood Heroes event in Fall 2018. To learn more about SCAASF, click Here.

Colorado Sickle Cell Association, Inc. (CSCA) provides Sickle Cell education, resources, counseling, referrals, and sponsors blood drives. On March 31, 2018, CSCA held their first major fundraiser of 2018, where 100% of the proceeds benefitted the foundation.

 
CSCA named Tiana Isaac as their 2018 Ambassador. CSCA chooses an ambassador that helps raise awareness about SCD. Tiana is 18 years old and has had a rocky course with SCD. She needed to use portable oxygen to get through each day and was frequently hospitalized. Through a worldwide donor match program, a unrelated match was found for her in Germany. Tiana had her stem cell transplant a few days prior to her 18th birthday and is doing well. She is finishing up her senior year of high school and has started working in an effort to save money to attend the National Sickle Cell meeting in Fall 2018. To learn more about the Colorado Sickle Cell Association, click Here.




 

New Resources:

 

PSCRC Minimum Dataset

 
In partnership with the Pacific Sickle Cell Regional Collaborative, UCSF Benioff Children’s Hospital in Oakland, California developed a one-pager reviewing the results of data collected during the first three years of the PSCRC’s Sickle Cell Disease Treatment Demonstration Program. The purpose behind these data collection efforts was to understand more about adults and children with sickle cell disease seen in the Pacific Region.

Click Here to see the entire document. Contact Marsha Treadwell, PhD at mtreadwell@mail.cho.org for more information.
 


 



 

SCD Disparities Fact Sheet


The CDC Foundation is raising awareness about these health disparities with a new fact sheet geared towards the general population. The fact sheet includes information about the Sickle Cell Data Collection program, which aims to use research findings to inform policy and health care changes that decrease health disparities for people with SCD. Click Here to access to the new fact sheet.


 
UPCOMING WEBINARS & EVENTS


Sickle Cell Anemia Awareness of San Francisco tables from 1:00 pm-4:30 pm at Zuckerberg San Francisco General Hospital on Mondays. Stop by and visit their table! Contact NeDina Brocks at crisis@scaasf.org to get more information.

 

May 31, 2018

The Sickle Cell Data Collection (SCDC) for California Program is holding a webinar entitled, “the Michigan Sickle Cell State Action Plan: Lessons Learned for California.” Presenters are Dr. Wanda Whitten-Shurney, assistant clinical professor of Pediatrics for the Wayne State University School of Medicine, Director of the Sickle Cell Clinic at the Children’s Hospital of Michigan, and the chief executive officer and medical director of the Michigan chapter of the SCDAA, and Dominic Smith, Michigan Department of Health and Human Services, Newborn Screening Follow Up Program. Click Here to join the email list to receive announcements about upcoming webinars.
 

July 31, 2018

The Sickle Cell Data Collection for California Program is holding a webinar entitled, “Sickle Cell Disease and Health Disparities.” Presenter is Dr. Wally Smith, Professor of Internal Medicine and Scientific Director of the Virginia Commonwealth University Center on Health Disparities. Click Here to join the email list to receive announcements about upcoming webinars.
 

June 21 – 22, 2018

Strategic Planning Meeting
The PSCRC will be co-hosting its 3rd annual Strategic Planning Meeting with Banner University in Phoenix, Arizona.

See Save the Date.
 

August 2018

The Colorado Sickle Cell Association is planning their 7th Annual 5K Run/Walk in August 2018. You can email coloradosicklecell@comcast.net for more information.
 

June 23, 2018

Phoenix Children’s Hospital (PCH) is hosting their annual World Sickle Cell Day community event. This is free to families and community members and this year PCH is working to include more adult and pediatric patients from other centers, including Tucson and Community Based Organizations.  Around 200 attendees are expected. For more information, contact Brooke Cook at bcook2@phoenixchildrens.com.

 

September 15, 2018

Sickle Cell Anemia Awareness of San Francisco will be holding their annual KMJ SC Warrior Walk. Stay tuned for more information or go to www.scaasf.org.


 
Copyright © 2018 PSCRC, All rights reserved.
 Pacific Sickle Cell Regional Collaboration

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