our impact

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!

Information for our sickle cell community during the COVID-19 pandemic Information surrounding COVID-19 changes rapidly. We'll continue providing updates here. Advisories HEALTH ALERT: What our Sickle Cell Community Needs to Know About the Coronavirus (COVID-19) from SCDAA PATIENTS RETURN TO WORK LETTER PROVIDERS SCD COVID-19 REGISTRY Be prepared, not scared! We encourage sickle cell patients to follow the guidance provided in the national Sickle Cell Disease Association of America's Health Alert and for everyone to practice sanitation and cleaning practices advised by the CDC, including avoiding crowds and gatherings (events, parties, church, etc.). Be aware that the virus can live on some surfaces for 2-3 days, and on clothing for unknown periods of time . Contact your doctor if you experience symptoms or have been in contact with COVID-19. Do you need medical insurance? Or a primary care physician (PCP)? Are you feeling underprepared or overwhelmed? SCDAA-MI staff is still working to meet your needs - just remotely. Please contact us with questions or for assistance at (313) 864-4406 or (800) 842-0973 or info@scdaami.org . Information about COVID-19 COVID info Michigan COVID-19 News and Information COVID-19 guidance for sickle cell from the Centers for Disease Control (CDC) COVID-19 Info from Michigan Health Departments SCDAA-MI worksite protocols If you've been exposed to COVID-19 COVID exposure Resources for daily life during the pandemic Pandemic resources Click here for a (PDF ) of the guide. La guía está disponible en español . Links to food, education, mental health resources and more. Job help : Unemployment information, guidelines for returning to work, and physician letters EMERGENCY PODCAST ON SICKLE CELL AND COVID-19 Help with resources If you need assistance navigating any of the services or resources listed above, please contact us: Detroit/SE Mich: (313) 864-4406 or (800)-842-0973 Children's Hospital SC Clinic: (313) 745-5613 Sickle Cell Trait Counseling: (313) 451-0014 School/Job Assistance: (734) 494-2119 Email: info@scdaami.org Contact our nearest satellite office: Adult Clinic Caseworker at DMC : (313) 864-4406 Benton Harbor/Kalamazoo Area: (313) 505-4081 Grand Rapids/Muskegon Area: (616) 426-9259 Jackson/Lansing Area: (800) 842-0973 Saginaw/Flint Area: (989) 372-0256

Do you need help locating a PCP & Hematologist? Disclaimer: This information including physician's names are for informational purposes only, does not constitute medical advice, diagnosis, treatment, and does not create a doctor-patient relationship. Key elements for the disclaimer: No Advice Guarantee: the listed names/profiles are not endorsements, recommendations, or medical advice. Limitation of Liability: The SCDAA-Michigan is not liable for actions taken based on the information provided. No Patient Relationship: browsing or using this list of information does not establish a doctor-patient relationship with the listed physicians. Emergency Disclaimer: call 911 or visit a hospital for emergencies, do not to rely on this directory/physician list. Accuracy Disclaimer: although the SCDAA-Michigan strives for accuracy, we do not guarantee the completeness or reliability of the physician information (information is subject to change). Coming Soon! This is your About page. This space is a great opportunity to give a full background on who you are, what you do and what your site has to offer. Your users are genuinely interested in learning more about you, so don’t be afraid to share personal anecdotes to create a more friendly quality. Every website has a story, and your visitors want to hear yours. This space is a great opportunity to provide any personal details you want to share with your followers. Include interesting anecdotes and facts to keep readers engaged. Double click on the text box to start editing your content and make sure to add all the relevant details you want site visitors to know. If you’re a business, talk about how you started and share your professional journey. Explain your core values, your commitment to customers and how you stand out from the crowd. Add a photo, gallery or video for even more engagement.

Let's Celebrate "September Is Sickle Cell Awareness" Month Register Here Calling all of our Grand Rapids and Michigan Residents!! If you are looking to celebrate Sickle Cell Awareness Month, please join us for this amazing event! We hope to see you there!

Your gift to 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. If you chose to make your gift anonymously, your name will not be listed in any materials where we might recognize donors. You will receive electronic receipts from PayPal Giving Fund. We will email a gift acknowledgement to the name and email address you provided. Thank you for your support! donation confirmation

Sickle Cell 911 provides fast, simple access to NIH recommendations and guidelines in treating acute sickle cell complications. 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

2020 Vendor & Exhibitor Form 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. Vendor and Exhibitor reservations are accepted on a first come-first served basis. Check or money order reservations must be mailed to be received by our office no later than September 10, 2020. Online reservations using a bank account or credit card can be made on this page up until September 15, 2020. Please make your display selection: * $100 - Vendor $500 - Exhibitor Vendor & Exhibitor Form Your support helps us change lives! Company/Organization Contact Name Address City, State Zip Code Email Address Phone Web Site URL and company/product description Service area (check all that apply) * Required Health & Wellness Financial Education Retail Youth Development Beauty & Fashion Other Please indicate your display choice: * Required Exhibitor experience - $125 Vendor experience - $50 Nonprofit supporter - $0 For nonprofit orders, please see instructions. SUBMIT YOUR ORDER Clicking submit will take you to the payment page. Exhibitor: $125 Virtual recognition to promote your business or organization: (1) pre- and (1) post-event social media mention; inclusion in our day-of online vendor presentation with business description and link included in Facebook post; listing on our web site’s Walk sponsor page; (1) business card ad on our web site's "classified" page; (1) business card ad in our fall e-newsletter. Vendor: $50 Virtual recognition to promote your business or organization: inclusion in our day-of online vendor presentation, name listing on our web site's "classified" page; (1) business card ad in our fall e-newsletter. Nonprofit: FREE Virtual recognition to promote your business or organization: name listing on our web site's "classified" page; (1) business card ad in our fall e-newsletter. You must complete your reservation manually and mail (see address below) or email along with a copy of your 501(c)3 IRS Determination Letter. Please note the following: Check or money order reservations must be received in our office by September 10, 2020. Make check or money order payable to SCDAA-MI. Mail to: SCDAA-Michigan, ATTN: Tracie Conic - Walk Vendor, 18516 James Couzens Fwy, Detroit, MI 48235 Online reservations using a bank account or credit card can be made through this page up until September 15, 2020. Questions? Please email Tracie Conic or call (313) 864-4406. Thank you for your support!

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 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 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

Your voice matters in the election process. The representatives we choose make decisions that affect access to healthcare, regional transportation, insurance laws, disability protections, prescription pricing and more. Join us as we speak out on behalf of individuals living with sickle cell and the legislation that affects them. OUR ADVOCACY PARTNERS Sickle Cell Disease Association of America Rare Disease Legislative Advocates Every Day Life Foundation Health Can’t Wait Coalition American Society of Hematology ARE YOU READY TO VOTE? To be eligible to vote in Michigan, you must be: A Michigan resident (at the time you register) and a resident of your city or township for at least 30 days (when you vote) A United States citizen At least 18 years of age (when you vote) Not currently serving a sentence in jail or prison Learn more about voting in Michigan here . Check your voter registration status here . Register online here . Absentee voting “Due to the constitutional amendment passed by voters in 2018, all eligible and registered voters in Michigan may request an absent voter ballot without providing a reason. They can visit their local clerk’s office for an absent voter ballot application or download one at Michigan.gov/Vote ” Michigan ballot drop locations You can take your absentee ballot to the drop box in your jurisdiction and track your ballot through the election process. advocacy & legislation Current issues we’re working on include: Securing coverage for new sickle cell treatments (We'll keep you posted!) DO YOU KNOW WHO REPRESENTS YOU? You can click here and enter your address to find your local, state and federal elected officials along with their names and contact information. Use the map to see Michigan's legislative districts . World Sickle Cell Disease Awareness Day in Michigan - June 19, 2020 2020 World Sickle Cell Day received legislative support this year as Rep. Ronnie Peterson introduced House Resolution #280 declaring June 19, 2020 as World Sickle Cell Awareness Day in Michigan. Rep. Peterson also introduced a bill to create a sickle cell license plate for Michigan. The bill received outstanding bi-partisan support. We are deeply grateful for these actions from our elected officials and the members of the Michigan Legislative Black Caucus who were able to join us at the capital. #BlackPatientLivesMatter Vote