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Career Opportunities at SCDAA-MI The Sickle Cell Disease Association of America – Michigan Chapter (SCDAA-MI), offers education, assistance, and advocacy to individuals living with and families affected by sickle cell disease. SCDAAMI provides counseling, support groups, referrals for financial and medical help, and connects students and job seekers with school, college and employment assistance, in addition to raising public awareness and sending children to summer camp each year. The agency also coordinates newborn screening for babies born in Michigan and conducts on-site blood testing to diagnose sickle cell trait and disease. All SCDAA-MI employees play a vital role in achieving our mission to improve the quality of life for people with sickle cell. Please click on the job availability below to join our team! ​ Position Available: ​ We do not have any available employment positions at this time. ​ ​ ​ The Sickle Cell Disease Association of America - Michigan Chapter is an Equal Opportunity Employer. jobs/ careers

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SICKLE CELL 911: FAST ACCESS TO GUIDELINES & BETTER CARE Empowering medical professionals to implement evidence-based sickle cell action. Amplifying the patient's voice in care. OPIOIDS & SCD NIH GUIDELINES COMPLICATIONS ASH POCKET GUIDES SCD EDUCATION SICKLE CELL 911 About the SAFE(R) Initiative Access/download a compilation of the NIH guides specific to SAFE(R). PARTNER WITH SAFER SAFE(R) stems from the sad and dangerous reality that many individuals with sickle cell opt to "wait out" an acute episode as long as possible rather than endure a traumatizing trip to the ED where they're likely to be stigmatized and/or undertreated. This treatment time lost equates to eventual organ failure or other tragic complications. Central to the SAFE(R) Initiative is the Sickle Cell 911 (#SCD911) card, the key to a site dedicated to acute sickle cell care, containing NIH guidelines in an easy-access form. For providers, Sickle Cell 911 serves as a portable portal to evidence-based practices, knowledge and resources for treating SCD and its complications. For the patient, it's evidence-based back up of information many have already shared to no avail. Or details they're too sick to effectively relay by the time they arrive in your ED. For us, it's a small way to take big steps toward catching up the adult medical community on strides pediatric practitioners have been making for the last 50 years: We've succeeded not only in getting sickle cell babies beyond the critical first five years, but we've now catapulted them into adulthood and find there is little safety net for their treatment and care. This reality shouldn't exist. You can be the change. "Only about 1 in 4 patients with sickle cell disease receive the standard of care described in current guidelines, and many studies have shown that patients do not receive treatment for their pain as soon as, or in appropriate doses as, other patients." -HHS Office of Minority Health #SickleCell911 #BlackPatientLivesMatter #EliminateHealthDisparities Join forces with SCDAA-MI! Assure Michigan sickle cell patients they're SAFE(R) in your facility than at home because you'll adhere to CDC and NIH guidelines in their care. ​ Here's what you can do: ​ Assess your ED's readiness to provide guideline-adherent emergency sickle cell care using ASH's approach . (PDF ) Let hospital and ED staff know that we're sending patients out with their SCD911 cards. Contact us to set a face-to-face meeting with your practice or hospital leadership and address any concerns. Give us the opportunity to speak directly with physicians, specialists and other medical professionals so we can discuss the burden of sickle cell, dispel common myths, and offer tips on adhering to the NIH guidelines. Spend some time with us. Meet our patients, their families, our staff and supporters. Put a face to the discussion. Let us know how you'd like to partner. ​ #ThankYou For more information, contact Stefanie Worth at the Sickle Cell Disease Association of America - Michigan Chapter. “We must ensure that people living with sickle cell disease don’t become collateral damage in the fight against the opioid overdose epidemic.” “During a pain crisis, SCD patients often suffer more than they should because of the complex nature and mechanisms of acute and chronic sickle cell pain, combined with a lack of understanding by health care professionals of the unique needs of these patients. We are committed to protecting their access to the appropriate and safe use of opioids, while developing more effective ways to prevent and treat SCD pain.” -Adm. Brett Giroir, MD, HHS Assistant Secretary for Health Visit our Sickle Cell 911 provider page to learn more about sickle cell and access information about current clinical practice guidelines. ​ here SOURCES: https://www.minorityhealth.hhs.gov/sicklecell/, https://www.ashclinicalnews.org/spotlight/feature-articles/the-other-opioid-epidemic/, https://ashpublications.org/hematology/article-lookup/doi/10.1182/asheducation-2017.1.412

media Keep up with SCDAA-MI news, articles and information from a variety of outlets on issues affecting sickle cell, and videos and webinars to keep you up-to-date about what's happening in the #sicklecell community. ​ SCDAA-MI OUT & ABOUT SCDAA-MI World Sickle Cell Day press release SCDAA-MI ANNOUNCES SAFE(R) INITIATIVE TO IMPROVE EMERGENCY SICKLE CELL CARE Effort aims to assist medical community in proper treatment of long-misunderstood disease ​ February 26, 2020 Read more ​ SAFE(R) provides medical professionals with quick access to an online portal at SCDAAMI.org/SickleCell911 that provides clinical practice guidelines for sickle cell established by the National Institutes of Health, sickle cell-specific opioid guidance from the Centers for Disease Control, as well as best practices and recommendations from the American Society of Hematology and other leading experts in sickle cell treatment. NHLBI Speaker "Thank you National Heart, Lung, and Blood Institute (NHLBI) for having me alongside these devoted advocates as a panelist for the “What is a Meaningful Cure?” panel discussion hosted by Dr. Wanda Whitten-Shurney . #CureSCI #sicklecell Thanks Teonna Woolford for the pic!! — with Velvet Brown-Watts , André Marcel Harris and Cassandra Trimnell at Hilton Washington DC/Rockville Hotel and Executive Meeting Center ." NEWS FROM AROUND THE COMMUNITY Toledo's Promedica Hospital has added an adult sickle cell clinic, the first of its kind in northwest Toledo. - WATCH & READ Get the clinic's info here Could gene therapy cure sickle cell anemia? - WATCH FDA approves first targeted therapy to treat patients with painful complication of sickle cell disease - READ FDA Approves Oxbryta™ (Voxelotor), the First Medicine Specifically Targeting the Root Cause of Sickle Cell Disease - READ Sickle Cell Disease Treatment Has Oklahoma Roots - READ Patient & caregiver focused videos All Categories Play Video Play Video 10:35 Sickle Cell Disease: a battle for equality, justice and respect | Ahmar Zaidi | TEDxDetroit What led a 46 year old Haitian artist to being kicked out of the hospital in the dead of winter? What led him to joblessness and homelessness? Part of the answer was in his blood...but most of the answer is us. Dr. Ahmar Zaidi is a pediatric hematologist who focuses on the care of people with sickle cell disease. He works at the Children’s Hospital of Michigan and is involved in research looking at pain in sickle cell disease patients. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx Play Video Play Video 03:54 Hour Detroit’s Excellence in Care Award Sharada Sarnaik, M.D., Pediatric Hematologist/Oncologists at Children’s Hospital of Michigan presented Hour Detroit’s Excellence in Care Award Play Video Play Video 07:12 SCDAAMI Questions about Hydroxyurea OUR THEME: Together we can make a difference and "break the sickle cycle" OUR MISSION To maximize the life potential of individuals living with sickle cell disease To enable individuals with sickle cell trait to make informed decisions with respect to family planning. To provide education and testing for the general public Play Video Play Video 10:16 World Sickle Cell Day | American Black Journal Clip Air date: 6/19/16. Three women on the front lines in the battle against sickle cell disease: Wayne County Prosecutor Kym Worthy, who is Board Chair of the Sickle Cell Disease Association of America’s Michigan chapter; Dr. Wanda Whitten-Shurney, a pediatrician at Children’s Hospital of Michigan; and Anastasia Worthy, Youth Ambassador of the Michigan Chapter of the Sickle Cell Disease Association of America. Episode 4437/Segment 1. Play Video Play Video 02:00 2018 Access to Care Summit Educating and Empowering Sickle Cell Patients 2018 Access to Care Summit: Educating and Empowering Sickle Cell Patients. Original published link: https://www.youtube.com/watch?v=cEHsyeTbYT8&t=9s Play Video Play Video 00:31 Annual SCD Therapeutics Conference Experience Wanda Whitten Shurney, M D Wanda Whitten-Shurney, M.D., the CEO and medical director of SCDAA – Michigan Chapter, explains the value that the annual Sickle Cell Disease Therapeutics Conference offers to the SCD community in this short video. To learn more, visit scdconference.com. Original published link: https://www.youtube.com/watch?v=IYP1YkA0W3A Play Video Play Video 05:48 Sickle cell disease: Why is it hard to talk about our pain? BBC Stories Sickle cell disease is a serious and lifelong health condition that predominantly affects people from African or Caribbean backgrounds. Symptoms include bouts of pain, strokes, organ failure, and complications that can result in reduced life expectancy. Some consider it a 'silent illness' as those who have the condition rarely speak about it or the pain that they live with. We speak to 25 year-old Chris who lives with the disease and started his own initiative that aims to create conversation about the condition. Produced by: Kesewaa Browne Filmed and edited by: James Stewart Animation: Gerard Groves Commissioning Editor: Kimberley Rowell #sicklecell #sickle #bbc We are BBC Stories, a group of journalists making films, long and short, with the younger audience (18-24) in mind. The idea is to tackle issues which concern and impact this group of people. So think about anything from race and identity to mental health, money and much more. Play Video Play Video 05:07 Prodigy Talks With Real Health About His Life With Sickle Cell Anemia Hip-Hop Star Prodigy talks with Real Health editor in chief Kate Ferguson about his life with sickle cell anemia. Provider-focused sickle cell videos Play Video Play Video 10:35 Sickle Cell Disease: a battle for equality, justice and respect | Ahmar Zaidi | TEDxDetroit What led a 46 year old Haitian artist to being kicked out of the hospital in the dead of winter? What led him to joblessness and homelessness? Part of the answer was in his blood...but most of the answer is us. Dr. Ahmar Zaidi is a pediatric hematologist who focuses on the care of people with sickle cell disease. He works at the Children’s Hospital of Michigan and is involved in research looking at pain in sickle cell disease patients. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx Play Video Play Video 04:23 Burden of Sickle Cell Disease Expert clinicians discuss the prevalence and overall burden of sickle cell disease across the globe and recognize the role of community physicians in managing the disease. Play Video Play Video 01:19 Dr Ahmar Zaidi on Efforts Needed to Address Complications of Sickle Cell Disease Ahmar Zaidi, MD, pediatric hematologist-oncologist, Comprehensive Sickle Cell Center, Children's Hospital of Michigan, discusses the need for more efforts from both the medical community and regulators to address the psychosocial complications of sickle cell disease. Play Video Play Video 09:09 Freda Lewis-Hall and TLC's "T-Boz" Discuss Sickle Cell Disease on The Doctors Dr. Freda Lewis-Hall, chief medical officer of Pfizer, appears on The Doctors to speak about sickle cell disease, a blood disorder that primarily affects African Americans, and the genetic trait linked to the disease. She and The Doctors are joined by Tionne "T-Boz" Watkins, of the musical group TLC, who lives with the condition. Check your local listings to see the whole show and learn more at www.GetHealthyStayHealthy.com. Freda Lewis-Hall and TLC's "T-Boz" Discuss Sickle Cell Disease on The Doctors

OUR PARTNERS ​ SCDAA Member Organization As a Member Organization of Sickle Cell Disease Association of America, we are positioned to work with other local organizations and with the National office to execute events, fundraisers, programs, and projects. For more information about our national agency, click here (insert logo and link to website). Our achievements are possible because of the continued commitment of our dedicated staff, Board of Directors, and other volunteers. We also wish to acknowledge the financial support from the state of Michigan Department of Health and Human Services, Federal Health Resource [i]and Services Administration (HRSA), City of Detroit- Planning & Development Department and the many agencies, organizations and individuals which have enabled us to provide free services for our clients. The Cynthia Coles Circle of Friendship Baptist Church has been a steadfast supporter of our organization as well as Community Health Charities. We could not have met the challenges presented by sickle cell conditions without the assistance we have received from the total community. We are deeply grateful for your generous support over the years and we intend to continue to be worthy of it. Our promise is to continue delivering dedicated comprehensive services, with true compassion. ​ CALL TO ACTION ​ If you would like to join us in improving the lives of individuals living with sickle cell disease, please take a moment to send a tax deductible contribution. Thank you!

If you inherit only one sickle hemoglobin gene from a parent you will carry the sickle cell trait. While the trait was once thought to be innocuous, in recent years more has been learned about carriers. People with the trait are more likely to suffer from conditions such as urinary tract infections or blood in the urine. Even athletes with sickle cell trait are now advised to take special precautions. sickle cell trait Sickle Cell Trait Facts ​ In some people the red blood cells can take on the shape of a farmer’s sickle. If you are born with this gene from one parent you have SICKLE CELL TRAIT. If you are born with this gene from both parents you have SICKLE CELL DISEASE. A person with sickle cell DISEASE has sickle cells in the blood stream which can cause health problems Such as pain, infection and anemia. A person with sickle cell TRAIT does not have sickle cells in the blood stream and does not have a disease. They're considered to be a carrier. If both parents have sickle cell TRAIT, each time a child is born there is a 25% (1 in 4) chance the child will have sickle cell DISEASE. This doesn't mean that if you have four children, one of them will have a chance of being born with sickle cell disease. It means that each child has a 25% chance of being born with the disease. There are two other fairly common traits that can also result in having a child with sickle cell disease: h emoglobin C trait and thalassemia trait. ​ Since you do not get sick from any of these traits, you may have one of them and not know it. People of childbearing age should know if they have any of these traits so that they can make informed decisions regarding family planning. ​ Know your trait status! View and download the full infographic here . SCDAA-MI offers free testing for sickle cell trait and sickle cell disease at its office: 18516 James Couzens Fwy, Detroit, MI 48235. Appointments and walk-ins are welcome. Call or contact us for more information. More info on the CDC's sickle cell trait site. Learn more about the NCAA and sickle cell trait

Vendor Payment Confirmation Donate/Join/Fundraise Since the Walk is now virtual, registration is optional. You can turn your registration fee into a donation, join/create a team or become a fundraiser. Team Set Up Once you create a team, you'll get an email for page set up. We also have step-by-step instructions here to personalize your page. Sponsor Info Your company sponsorship heightens the visibility of your commitment to social responsibility. The return on investment benefits us all. Vendor/Exhibitor This year we're offering two vendor experiences: Both provide virtual promotion, one also offers limited sponsor benefits. Legacy Warriors Are you a sickle cell warrior who's 40 or older? We invite you to join our Legacy Salute! Sign up here by 9/5 to be included. Thank you for completing your Vendor/Exhibitor Reservation for our 2020 Sickle Cell Matters Virtual Walk! Your support of the Sickle Cell Disease Association of America - Michigan Chapter helps ensure that counseling, educational, medical, and basic needs services are addressed for people with sickle cell. By supporting our work, you help improve lives. ​ Tracie Conic , Director of Client Services at SCDAA-MI, coordinates vendor and exhibitor activities for the Walk and will contact you with further instructions and information. You will receive an electronic payment receipt from PayPal. Please save your receipts. Thank you for your support!

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Sickle Cell Disease Association of America - Michigan Chapter Staff Tracie L. Conic, M.A., B.S.W ​Director of Client Services/HIPAA Compliance Officer ​ ​ Tonya Ashwood-Malone Data Manager ​ Khaleeda Robinson, MPH., B.S. Community Health Worker/Patient Advocate Detroit Michael Copeland, B.S. Community Health Worker/Patient Advocate Grand Rapids/Muskegon Area Jessica Williams​ Program Assistant Ben Frazier, B.S.W. Community Health Worker/Patient Advocate Saginaw/Flint Area Melanie Greer, B.S. Community Health Worker/Patient Advocate Benton Harbor/Kalamazoo ​ ​ ​ ​ Craig Bradley Director of Operations & Outreach ​ Darlene Hunt Maintenance/Courier Kristal Johnson-Cobb Administrative Assistant Cree King-Jackson Executive Assistant/Newborn Screening Assistant ​ Clifton Kirkman II Social Media Specialist ​ Jerica McBride, M.A. Education/Career Coordinator ​ Angela McCreary, B.S.W. Community Health Worker/Patient Advocate Lansing/Jackson Area Richard Reed Finance Manager ​ Wanda Whitten-Shurney, M.D. CEO & Medical Director our staff

sickle cell conditions SCROLL Sickle cell disease is the most common heritable blood disorder in the U.S. It affects 100,00 people, most of them living healthier and longer lives than would've been possible one or two generations ago. The disease is chronic, complex and challenging. But at the SCDAA-MI, we are resilient and resourceful - committed to improving lives. We're here to win. DISEASE & TRAIT What & How Learn about the history, transmission and variability of sickle cell disease, and what we're discovering about trait. Read More PATIENT SUPPORT Find Answers You have questions, we're here to help you get answers. Cut through the internet chatter with credible tips, tools and insights. Read More TREATMENTS Is there a cure? A universal cure isn't here yet, but there are disease-altering treatments for children & adults that you should know about. Read More SAFE(R) Stay SAFER in the ER Learn more about our SAFE(R) initiative and the evidence-based guidelines in place for emergency sickle cell care. Read More

SICKLE CELL 911: FAST ACCESS TO GUIDELINES & BETTER CARE Empowering medical professionals to implement evidence-based sickle cell action. Amplifying the patient's voice in care. " Only about 1 in 4 patients with sickle cell disease receive the standard of care described in current guidelines, and many studies have shown that patients do not receive treatment for their pain as soon as, or in appropriate doses as, other patients." - HHS Office of Minority Health PROVIDER INFO SCDAA HEALTH ALERT - COVID-19 AND SICKLE CELL DISEASE: An Outline to Decrease Burden and Minimize Morbidity PARTNER WITH SAFER COVID REGISTRY ASH COVID FAQs TOP OPIOIDS & SCD NIH GUIDELINES COMPLICATIONS ASH POCKET GUIDES ABOUT SAFE(R) SCD EDUCATION IF A PATIENT GIVES YOU THIS CARD, PLEASE CLICK THE IMAGE FOR NIH GUIDELINES! PLEASE TRIAGE AS ESI 2 PER NIH AND AHRQ "It is not possible to manage pain at triage for patients with renal colic, cancer, or sickle cell crisis. These patients should be triaged as ESI level 2 and rapid placement should be facilitated whenever possible." - AHRQ, Emergency Severity Index (ESI) Implementation Handbook (see page 26) Web site PDF NIH SICKLE CELL PAIN ALGORITHM HOW TO CONDUCT A SICKLE CELL ASSESSMENT These videos from Duke University's School of Nursing demonstrate how to conduct an assessment for a sickle cell patient's vaso-occlusive crisis (6 mins) and a patient with a high number of ED visits who might face perceptions of opioid addiction or drug-seeking behavior (3 mins). ABOUT THE SAFE(R) INITIATIVE SAFE(R) stems from the sad and dangerous reality that many individuals with sickle cell opt to "wait out" an acute episode as long as possible rather than endure a traumatizing trip to the ED where they're likely to be stigmatized and/or undertreated. This treatment time lost equates to eventual organ failure or other tragic complications. We're asking the medical community to partner with us in assuring patients that they'll be SAFE(R) in your facility because you'll adhere to CDC and NIH guidelines in their care. ​ Access/download a compilation of NIH guides specific to SAFE(R). ​ Printable patient SCD911 SAFE(R) Card . ​ Learn more about the SAFE(R) Initiative . CDC CLARIFICATION ON OPIOIDS FOR SCD Read the clarification letter from CDC to ASH online . ​ Read the CDC's statement against misapplication of the guideline here. Opioids and Sickle Cell BACK TO THE TOP NIH Sickle Cell Guidance NIH EVIDENCE-BASED MANAGEMENT OF SICKLE CELL DISEASE NIH full recommendations Click the image at left for a PDF of the full 161-page NIH recommendations. This link will take you directly to the full document at NIH's site. NIH Quick Guide to Recommendations "The purpose of this Guide to Recommendations is to provide clinicians with a digital resource of the treatment recommendations extracted from the full report. For more information, please refer to the full report. . . ." ​ Click the image at right for a pdf of the 48-page Quick Guide. This link will take you directly to the Quick Guide document at NIH's site. NIH GUIDELINES: ACUTE CARE BREAKOUT For ease-of-access, this section contains a breakout of individual acute complications of sickle cell with links to corresponding PDFs from the Quick Guide and the full recommendations. What does the patient report? Remember, there are no labs that can indicate or confirm a patient's level of pain ! Acute Chest Syndrome: Quick Full ​ Acute Stroke: Quick Full ​ Anemia: Quick Full ​ Fever: Quick Full ​ Hepatobiliary: Quick Full ​ Multi-System Organ Failure: Quick Full ​ Ocular Conditions: Quick Full ​ Priapism: Quick Full ​ Renal Failure: Quick Full ​ Splenic Sequestration: Quick Full ​ Vaso-occlusive crisis/pain episode: Quick Full ​ Complications ASH Pocket Guides ASH POCKET GUIDES FOR ACUTE AND NON-ACUTE CARE MANAGEMENT ASH POCKET GUIDE - MANAGEMENT OF ACUTE COMPLICATIONS OF SICKLE CELL Click the image to access a PDF of ASH's Management of Acute Complications of Sickle Cell Disease pocket guide. Presented by ASH in 2014, adapted from the National Heart, Lung, and Blood Institute's Evidence Based Management of Sickle Cell Disease: Expert Panel Report, 2014. (Click here to go directly to ASH's web site for links to all its sickle cell pocket guides.) ACCESS ALL ASH POCKET GUIDES FOR MANAGING SICKLE CELL Click here to go directly to ASH's web site for links to all the sickle cell pocket guides. The following links will take you to individual PDFs for download. Cardiopulmonary and Kidney Disease in Sickle Cell Disease: Screening and Management This pocket guide includes key recommendations from the American Society of Hematology 2019 guidelines for sickle cell disease: cardiopulmonary and kidney disease, available soon in Blood Advances. ​ Health Maintenance and Management of Chronic Complications of Sickle Cell Disease Presented by ASH in 2014, adapted from the National Heart, Lung, and Blood Institute's Evidence Based Management of Sickle Cell Disease: Expert Panel Report, 2014 ​ Hydroxyurea and Transfusion Therapy for the Treatment of Sickle Cell Disease Presented by ASH in 2014, adapted from the National Heart, Lung, and Blood Institute's Evidence Based Management of Sickle Cell Disease: Expert Panel Report, 2014 ​ Download the apps: For iOS For Android Web version of the apps BACK TO THE TOP SOURCES: https://www.minorityhealth.hhs.gov/sicklecell/, https://www.nhlbi.nih.gov/health-topics/evidence-based-management-sickle-cell-disease, https://www.nhlbi.nih.gov/sites/default/files/media/docs/Evd-Bsd_SickleCellDis_Rep2014.pdf, https://www.hematology.org/Clinicians/Guidelines-Quality/Quick-Reference.aspx, https://sickleemergency.duke.edu/educational-resources/videos, https://www.ahrq.gov/sites/default/files/wysiwyg/professionals/systems/hospital/esi/esihandbk.pdf