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Who we are:
The Center for Inherited Blood Disorders (CIBD) and UCSF Benioff Children’s Hospital Oakland (BCHO) are leading the Pacific Sickle Cell Regional Collaborative (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/.
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
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Statewide Action: Sharing Knowledge - Locally, Regionally, and Nationally
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Arizona
On June 23rd, Phoenix Children’s Hospital celebrated World Sickle Cell Day with their seventh annual community event to promote awareness and treatment of sickle cell disease. With more than 150 guests in attendance, the event featured guest speakers, fun for the kids and a day to come together to show support for our patients and families.
Markus Golden, an Arizona Cardinals NFL player and a Celebrity Champion, filmed a public service announcement to raise awareness for sickle cell disease at Phoenix Children's Hospital on June 19, 2018. This was in support of fundraising efforts of Sickle Cell Disease Association of America. The event was attended by community members and staff from the sickle cell clinic at Phoenix Children's Hospital.
Montana
Increasing access to care: The team at Northwest Oncology and Hematology are continuing to expand services in Montana to provide access to pediatric hematology throughout the state. Outreach clinics are now being held in Missoula, Bozeman, Great Falls, and Helena, with their primary location remaining in Kalispell, Montana. Furthermore, Montana Children’s Medical Center, the first dedicated pediatric facility in the state is on target to open in the spring of 2019. For more information on Montana Children's Medical Center, go to: https://flatheadbeacon.com/2017/08/19/montana-childrens-medical-center-emerging-states-largest-pediatric-provider/
New Provider UPDATE: In August 2018, Allie Maffit, MD will be joining the care team at Northwest Oncology and Hematology to help with the increase in patient volume. With this addition, the medical group will have three pediatric hematologists/oncologists and one nurse practitioner. Dr. Maffit will be joining Northwest Oncology and Hematology after completing her pediatric hematology and oncology fellowship at Oregon Health and Science University. Dr Maffit attended Creighton University School of Medicine and completed her pediatric residency at Grand Rapids Medical Education Partners/Michigan State University.
For more information, please contact the PSCRC's Site lead for Montana, Courtney Lyle, MD clyle@krmc.org.
Nevada
On Thursday, June 28, 2018, Cure 4 the Kids Foundation patients and families attended a Sickle Cell Education Night. The topic was “Transfusions in Sickle Cell – Why and Why Not?”. Dr. Nik Rashid (Principal Investigator for the PSCRC in Nevada) was the main presenter and spoke about transfusions in sickle cell disease. Educational material was distributed to the group and Dr. Rashid and her team answered questions from attendees. Visitors from Dreamsickle shared some of their information along with some handouts. There were some past visitors as well as new visitors who attended the education night and Dr. Rashid hopes to continue to grow programs to educate others about sickle cell disease.
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Oregon
On July 6, 2018, members of the Pacific Sickle Cell Regional Collaborative traveled to Portland to meet with Trisha Wong, MD, MS (Oregon Health and Science University), Pastor Marcia Taylor (Sickle Cell Anemia Foundation of Oregon), Mike Recht, MD, PhD (Director of the Hemophilia Treatment Center at OHSU), Susan Lattimore, RN (Associate Director of the Hemophilia Treatment Center at OHSU and the Region 10 Regional Coordinator), and clinical staff at OHSU to discuss the state of sickle cell in Oregon. Discussions focused on strengthening the partnership between OHSU and the local community based organization. Susan Claster, MD (Adult Hematologist for the Martin Luther King Jr. Outpatient Center in Los Angeles, CA) gave a well attended lecture to OHSU physicians and nurses on best practices when caring for adults with sickle cell disease. We held a drop-in session where staff at OHSU were able to discuss their concerns and challenges, and possible solutions for sickle cell care at the hospital and throughout the state. Dr. Wong, Principal Investigator and Site Lead for Oregon will use this information to create a useful and meaningful framework that will address the needs of individuals with sickle cell disease and clinical staff in Oregon.
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Sickle Cell Disease Foundation (SCDF)
Camp Crescent Moon is all sunshine and smiles as they celebrate youth living with sickle cell disease. SCDF’s Board of Directors, along with the SCDF team and community supporters have all rallied together to raise approximately $150,000 for the camp’s operations. SCDF was able to reach 50% of their financial goal to cover the cost of camp for over 90 campers, 60 support staff and volunteers, and 15 clinicians. All hands are on deck as the foundation engaged volunteers from as near as Los Angeles, CA and as far as Raleigh, NC!
Each year, steady and tedious work to improve the overall health of the individuals SCDF serves, is reinvigorated as the Foundation renews their commitment to serving those living with sickle cell disease. Staunch supporters of the Sickle Cell Disease Foundation were able to see their dollars and time commitments in action as they toured the Temescal Canyon Gateway Park in Pacific Palisades, CA. As an additional highlight, Camp Crescent Moon was visited by Senator Henry Stern of the 27th District of the State of California where he was able to attest to how beautifully the park has come to life.
SCDF thanks all of supporters who showed up to fortify their commitment to the SCDF Cause, including but not limited to, the Center for Inherited Blood Disorders, Pfizer Pharmaceuticals, Tony Gonzalez, Herzog Corporation, and the Alpha Phi Alpha Fraternity.
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Foundation for Women and Girls with Bleeding Disorders
New Service Directory for Women & Girls with Sickle Cell Disease
The Foundation for Women & Girls with Blood Disorders (FWGBD) announced a new service map directory that shares information about services specifically devoted to the care of women and girls with sickle cell disease provided by hemophilia/thrombosis treatment centers (HTCs) and nationally recognized sickle cell centers across the country and helps unite providers in their efforts to treat pregnant women with SCD effectively.
Read the full article http://files.www.fwgbd.org/news/fwgbd-announces-new-directory-for-women-girls-with-sickle-cell-disease/WGSCD_Directory_Announcement%206-18.pdf.
To be listed in the directory, please complete the survey: https://www.surveymonkey.com/r/SCDDirectory
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Centers for Disease Control and Prevention
Stepping Up: A 2-Part CDC Video Series for Teenagers & Young Adults with SCD
For World Sickle Cell Day, the Centers for Disease Control and Prevention (CDC) released a new 2-part video series focusing on health care transition among teenagers and young adults living with SCD. The videos feature Northern Californians, Kevin and Calvanay, two young adults with SCD, who share their thoughts about transition, how it has affected them, and how they’ve overcome challenges.
Visit https://www.cdc.gov/ncbddd/sicklecell/index.html to view the videos.
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Sickle Cell Data Collection
Program Brief
The Sickle Cell Data Collection Project recently released a program brief about the importance of coordinated outpatient care in addressing the high ED utilization that is characteristic of the sickle cell disease population once they leave pediatric care. Click https://ghpc.gsu.edu/download/sickle-cell-data-collection-program-brief/ to view the entire brief.
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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. Contact Marsha Treadwell, PhD at mtreadwell@mail.cho.org for more information.
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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.
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Sickle Cell Anemia Awareness of San Francisco will have a table out 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.
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.
August 2018: The Colorado Sickle Cell Association is planning their 7th Annual 5K Run/Walk in August 2018. Stay tuned for more information! You can email dixon112@comcast.net for more information.
August 2018: Cayenne Wellness Center and Children’s Foundation offers support groups across Southern and Central California. The goal is to reach Sickle Cell Warriors in all communities, but particularly those areas where quality medical care may be difficult to locate. You can find Cayenne Wellness Center at the following locations throughout August:
- August 2nd at LAC + USC Wellness Center, 1200 North State Street, 6:00 - 8:00 p.m.
- August 9th at Loma Linda, PossAbilities Office,25455 Barton Road Suite 109A, 6:30 to 8:30 p.m.
- August 14th in Lancaster: Antelope Valley Hospital COH - MultiPurpose Room6:30 - 8:00 p.m
- August 16th in Fresno: Maxie Parks Community Center, 1802 E. California Ave, 6:00 - 8:00 p.m.
- August 28th in San Diego at Valencia Park / Malcolm X Library, 5148 Market Street, 6:00 - 7:45 p.m.
Email info@cayennewellness.org or call at 818-940-0079 to find out more or if you have any questions.
Website: http://www.cayennewellness.org
Twitter: @cayennewellness
September 6-8, 2018: Cayenne Wellness Center will be holding their 10th Annual Sickle Cell Disease Educational Seminar at UC Davis Medical Center in Sacramento, CA. The seminar is intended to inform California physicians, nurses, patients, patient caregivers, patient advocates, and community members on the latest curatives and treatments in sickle cell disease. Keynote speakers include Drs. Elliot Vichinsky and Cage Johnson. This year’s seminar focuses on Integrative Medicine and Sickle Cell Disease, as well as a Legislative Action Workshop designed to educate and motivate the entire community to get involved in the fight against sickle cell disease and sickle cell trait education and awareness.
Target Audience: Individuals living with sickle cell disease and sickle cell trait and their family members, physicians, nurses, social workers, psychologists and community health workers will all benefit from these educational offerings. Sickle Cell Warriors are able to attend for the flat rate of $25.00, this includes lodging, food, and transportation!
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