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Sponsor Information 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. Our 2020 Sickle Cell Matters Virtual Walk Sponsors Diamond Presenting Silver Copper Pfizer Donating to SCDAA-MI benefits the thousands of individuals who depend on our education, advocacy and awareness efforts. It also benefits your corporate responsibility goals. Honorary Chair: Deborah Smith Pollard Co-host of "Sunday Morning Inspiration" on MIX 92.3 FM and Professor of English Literature at the University of Michigan-Dearborn. Honorary Co-Chair: Dr. Ahmar Zaidi Pediatric Oncologist/ Hematologist, Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan, and known to many as "Dr. Z". 2020 Sickle Cell Matters Walk sponsorships help provide educational and career resources to students and adults, ensure quality counseling services for navigating life with this chronic condition, offer a bridge to primary and specialty care for underserved individuals, support low-income clients in need of emergency financial assistance to meet basic needs, and more. Many of our sponsorships provide year-round engagement opportunities for companies and employees. Click here to download the sponsorship packet. We're also looking for community partners to serve on our Sickle Cell Matters Walk Host Committee. Click here to download the interest form. For more information, contact Stefanie Worth , Director of Operations & Outreach at 313-864-4406.

summer camp Our summer camp experience provides a unique opportunity for our children to gain self-confidence and independence. It also helps parents overcome issues of over protectiveness which may occur when raising a child with a chronic illness. Summer Camp North Star Reach Virtual Fall Family Camp North Star Reach is continuing to keep the health and safety of campers, families, staff and volunteers their top priority. Therefore, they are continuing with virtual Camp-at-Home programming this fall for family camps instead of on-site programming. Below is their fall camp schedule, and a brief online registration form is now live at the Camp-At-Home website .

sickle cell disease Living with sickle cell disease isn't easy, but proper knowledge about the condition will help patients live a longer, healthier life and guide trait carriers in making educated child-bearing decisions. Symptoms & Complications Sickle cell trait Top A history of sickle cell What Is Sickle Cell Disease? Sickle cell is an inherited blood disorder in which the red blood cells change their shape. It is a genetic abnormality and is caused by an abnormal type of hemoglobin, called hemoglobin S or sickle hemoglobin. Normal red blood cells have a disc-like shape, but in patients of sickle cell disease, they take on a crescent or sickle shape. Normal blood cells carry oxygen to the body, but altered cells cannot move easily through your blood vessels, which affects the oxygen supply. These altered cells cannot carry oxygen properly because when they release oxygen, it sticks together and changes the shape of the red blood cell. Prevalence of Sickle Cell Disease Sickle cell has existed for thousands of years and millions of people around the world suffer from the disease, but it's more common in people with an African bloodline. It is also quite common in people whose ancestors come from the Arabian Peninsula; Mediterranean countries such as Turkey, Greece, and Italy; Central America; Spanish-speaking regions in South America; and parts of the Caribbean. As a whole, it affects approximately 100,000 Americans and is the most common heritable blood disorder in the U.S. How Do You Inherit Sickle Cell Disease? Sickle cell disease is not contagious – you're born with it. A child may have this disease when he/she inherits one hemoglobin S gene from each parent. About 1 in every 365 African American babies are born with sickle cell each year and. While the disease primarily affects African Americans and people of color - including individuals of Hispanic and Middle Eastern descent, anyone can inherit sickle cell if the genetics are in place. There are also other sickle cell mutations, including Hemoglobin SC disease and hemoglobin Sβ thalassemia, the two most common. Sickle Cell Trait 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 with their health. Learn more about sickle cell trait sickle cell trait Artwork copyright Ebony.com . Explore More In-Depth Information American Society of Hematology ASH Centers for Disease Control CDC National Institutes of Health NIH Back to the top Sickle Cell Disease: Milestones in Research and Clinical Progress (REVISED September 2018) - download here History A History of Sickle Cell Download the PDF here Back to the top

News media releases and alerts from SCDAA-MI press releases 2019-20 Press Releases September 17, 2020: MEDIA ALERT: SCDAA-MI marks Sickle Cell Awareness Month with walk, ER call-to-action June 12, 2020: SCDAA-MI “Shines the Light” for World Sickle Cell Day, June 19 February 26, 2020: SCDAA-MI Announces SAFE(R) Initiative to Improve Emergency Sickle Cell Care November 20, 2019: Dr. Wanda Shurney Responds to FDA's Approval of Adakveo Top FOR IMMEDIATE RELEASE September 17, 2020 ***MEDIA ALERT*** SCDAA-MI marks Sickle Cell Awareness Month with walk, ER call-to-action Virtual walk participants encouraged to “move how you choose” on Sept. 19 Physician, hospital partners urged to take a stand for SAFER sickle cell care WHAT: The annual Sickle Cell Matters Walk raises consciousness around the most common genetic disorder in the U.S., but this year it happens from wherever participants are. More than just an awareness event, SCDAA-MI’s walk raises funds, promotes the need for additional sickle cell research, and combats medical inequities often faced by sickle cell patients. #SickleCellMatters #SickleCellMattersWalkMI #SickleCellLivesMatter WHO: SCDAA-MI CEO & Medical Director, Wanda Whitten-Shurney, M.D.; Honorary Chair Deborah Smith-Pollard, co-host of “Sunday Morning Inspiration” on MIX 92.3 FM and Professor of English Literature at the University of Michigan-Dearborn; Honorary Co-Chair, Ahmar Zaidi, M.D., a Pediatric Oncologist/Hematologist, in the Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan, and nationally known SCD advocate known to most as “Dr. Z.” Event sponsors: (Diamond Presenting) Global Blood Therapeutics and Emmaus Life Sciences; (Silver) Novartis, Medunik USA, and Wayne County Community College District; (Copper) Pfizer and Functional Fluidics. WHY: Though medically recognized more than 100 years ago, it was only the introduction of prophylactic penicillin in the 70s and subsequent comprehensive pediatric efforts that now allow most individuals with sickle cell to live far beyond childhood and well into adulthood. However, there are just four disease-modifying treatments available to sickle cell patients, with two of those achieving FDA approval less than a year ago. Most patients, then, resort to emergency department care for sickle cell’s unpredictable, indescribable pain crises. Once there, only about one in four patients receives 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, according to the U.S. Health and Human Services Office of Minority Health. WHEN: Saturday, Sept. 19 WHERE: The virtual Sickle Cell Matters online program premiers at 10 a.m. EST on SCDAA-MI’s YouTube channel (https://www.youtube.com/channel/UChFCW2PqipdZiRKcb16Z5Gw ) and Facebook Live @SickleCellMichigan. Interested hospital and physician partners can learn more and partner with SAFER at www.scdaami.org/sicklecell911. MEDIA CONTACT: Stefanie Worth | email: worths@scdaami.org ABOUT SCDAA-MI: Our Mission: To maximize the quality of life 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. Founded in 1971 by Charles F. Whitten, M.D., the Sickle Cell Disease Association of America – Michigan Chapter, provides education, assistance, and advocacy for individuals living with and families affected by sickle cell disease. Other services include counseling, support groups, referrals for financial assistance and medical care. SCDAA-MI connects students and job seekers with school, college and employment assistance; sends children to summer camp each year, and works to raise public awareness. The agency also serves as the coordinating center for the newborn sickle cell screening program for the Michigan Department of Health and Human Services. SCDAA-MI’s services are available throughout Michigan and span lifetime needs. For more information, visit www.scdaami.org or call 313-864-4406. ### BACK TO THE TOP 2020 walk SCDAA-MI “Shines the Light” for World Sickle Cell Day, June 19 Supporters are asked to #MaskUp4SickleCell, celebrate community grads, and recognize #SickleSabbath JUNE 12, 2020 PRESS RELEASE PDF CONTACT : Stefanie Worth Sickle Cell Disease is the most prevalent inheritable blood disorder in the country, affecting 70,000 – 100,000 individuals, most of whom are African American. “It’s a blood disease, not a black disease,” says Dr. Wanda Whitten-Shurney, citing one of the takeaways her agency and other community-based sickle cell organizations want people to learn through this year’s World Sickle Cell Day events. Sickle cell is genetic – not contagious – and most common among people of African descent and those of Latin American and Middle Eastern heritage, but can affect anyone of any race. “We have an entire weekend of activities that include generating awareness, honoring our graduates, and learning during worship,” says Shurney, CEO and Medical Director of the Sickle Cell Disease Association of America – Michigan Chapter Inc. “We’re sending our message out into the world to create change on behalf of a group of individuals who were born with a disease that is almost always automatically discriminated against.” Efforts for World Sickle Cell Day, Friday, June 19, aim to enlighten the community-at-large. A social media blitz featuring the hashtags #MaskUpForSickleCell and #BehindTheMask will feature photos of patients, caregivers and allies in red masks telling their stories and sharing key messages: Sickle cell disease affects individuals of all races. It’s a BLOOD disease, not a Black disease. It is in your genes. It is NOT contagious. Individuals with sickle cell disease are not drug addicts, they need pain relief. If both parents have sickle cell trait they can have a child with sickle cell disease. GET TESTED to know for sure. Though medically recognized more than 100 years ago, it was only the introduction of prophylactic penicillin in the 70s and subsequent comprehensive pediatric efforts that now allow most individuals with sickle cell to live far beyond childhood and well into adulthood. To help celebrate their milestones, World Sickle Cell Day continues on Saturday, June 20 with a Virtual Graduation Open House for students finishing high school, trade school or college. On Sunday, June 21, World Sickle Cell Day attention turns to houses of worship varying in size, denomination and membership composition for Sickle Sabbath. This outreach effort focuses on educating people about sickle cell trait, which is carried by approximately 1 in 12 African Americans. SCT is also found among people with ancestry from sub-Saharan Africa; the Western Hemisphere (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy according to the Centers for Disease Control. “Sickle cell disease starts with sickle cell trait” is the message churches are asked to carry to their congregations along with information about chances of inheritance and challenges of the disease. “This is an impactful time in America and we hope that World Sickle Cell Day can build on the Black Lives Matter movement to create real change in medical settings for people with sickle cell. I’m calling on my colleagues who knelt in solidarity with White Coats For Black Lives to create a movement that makes the emergency rooms and hospitals safe spaces for sickle cell patients,” says Shurney. “The hallmark of sickle cell is excruciating, unpredictable pain that often drives patients to seek care in emergency departments,” Shurney continues. “These are individuals who’ve often lived with pain since childhood and – being good patients – know their bodies and what they need to control their pain, which is typically opioids. Yet they arrive at hospitals seeking relief and are often accused of being there just to get drugs. You would think they’d be treated like a Type 1 diabetic who shows up needing care and knows their proper insulin dosage, but they’re not.” In February, SCDAA-MI launched its SAFE(R) initiative to help counter this reality. 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 CDC, and emergency room triage guidelines from the Agency for Healthcare Research and Quality, as well as best practices and recommendations from the American Society for Hematology and other leading experts in sickle cell treatment. Only about one in four patients with sickle cell disease receives 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, according to the U.S. Health and Human Services Office of Minority Health. “The world is at a crossroads and so is sickle cell disease. Two new medications were approved by the FDA for treatment at the end of 2019. Yet, patients still face barriers accessing these meds and receiving competent, compassionate medical care,” says Shurney. “Too many providers still don’t know how to properly treat sickle cell patients. Stereotypical biases prevent many individuals from receiving care according to nationally established guidelines – or any care at all. “We have a long way to go to reach health equity where sickle cell is concerned. Now is a great time to start.” BACK TO THE TOP 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 PRESS RELEASE PDF CONTACT : Stefanie Worth Today, the Sickle Cell Disease Association of America - Michigan Chapter launched a new initiative designed to help advance the care and well-being of individuals living with sickle cell disease. The initiative, known as 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. Though medically recognized more than 100 years ago, it was only the introduction of prophylactic penicillin in the 80s and subsequent comprehensive pediatric efforts that now allow most individuals with sickle cell to live far beyond childhood, although their lifespan still falls short of the national average by about 30 years. Yet, while research and treatments for the disease are now gaining more attention, individual’s lives are at stake daily due to a lack of adult medical providers trained in sickle cell’s complexities. In fact, there is a peak in mortality at the time of transition from pediatric to adult care. “For more than 30 years, I’ve had the privilege of serving as pediatrician to Michigan children with sickle cell disease – caring for them and their families, and advocating for their needs. Along with my colleagues across the country, we’ve achieved levels of success in their healthcare that my father only dreamed of when he started SCDAA-MI 49 years ago,” says Dr. Wanda Whitten-Shurney, CEO and Medical Director. “Now we’ve reached this pivotal point in sickle cell history where research and treatment possibilities are at an all-time high, yet, we are losing far too many patients we’ve brought all this way for the past four decades to a medical system unprepared to receive them.” The emergency room – a frequent stop for our patients – is an extremely perilous place for adults. Individuals out-of-state have often reached out to their former pediatricians at the Children’s Hospital of Michigan Sickle Cell Clinic asking them to coach a doctor in charge of their care unfamiliar with the disease. The situation has produced a skepticism among patients that they’ll be adequately cared for, sometimes causing them to take their chances and not go to the ED at all. Central, then, to the SAFE(R) Initiative is the wallet-sized Sickle Cell 911 (SCD911) card, which directs providers to the SAFE(R) site at SCDAAMI.org/SickleCell911 . In addition to guidelines, recommendations and best practices, the medical professional-focused pages also provide educational resources about the disease and its potential complications. Sickle cell patients are advised to carry the SCD911 card with them and present it when they need emergency care – whether at home or away. Patients and caregivers have shared stories about ED providers resorting to the internet or medical journals to find information about treating the disease. The SAFE(R) initiative puts that information at providers’ fingertips in an easily accessible and usable format, hopefully saving crucial acute care time that in turn leads to saving lives. “I’m appealing – no, challenging – my counterparts in adult primary, specialty, and emergency medicine to partner with us in changing this narrative by committing to SAFE(R) treatment. It’s time for a plot twist, so to speak, and we invite you to help re-write the future chapters of the sickle cell story. Patients throughout Michigan are looking for SAFE(R) spaces for care every day. Let us know we can confidently refer them to you and your health systems for this compassionate, equitable, and guideline-based treatment. History will thank you and so will we.” BACK TO THE TOP Dr. Wanda Shurney Responds to FDA's Approval of Adakveo First targeted treatment sparks excitement and hope among doctors and those living with the debilitating condition November 20, 2019 PRESS RELEASE PDF CONTACT : Stefanie Worth Friday, the FDA gave its approval for Adakveo (crizanlizumab-tmca) , the first targeted therapy to treat pain in patients with sickle cell disease (SCD). “This medication is a potential game changer in the quest for better treatment for patients with sickle cell disease (SCD),” said Wanda Whitten-Shurney, M.D., CEO and Medical Director of the Sickle Cell Disease Association of America - Michigan Chapter (SCDAAMI). “We are excited that after 109 years, individuals with SCD can finally say there is a medication developed specifically for them. For 20 years our patients had only one disease modifying medication, hydroxyurea. “Unfortunately, because it is a drug used to treat cancer, many physicians are hesitant to prescribe it and many patients are afraid to take it – leaving supportive care such as blood transfusions, antibiotics for infections, and potent narcotics for essential pain relief as their only options,” said Dr. Shurney. First recognized by the medical community in the United States in 1910, SCD is a genetic condition inherited from two parents who carry the gene for sickle cell trait. The hallmark of the disease is episodes of unpredictable and often excruciating pain due to crescent- (sickle) shaped red blood cells that block the flow of blood, and therefore the delivery of oxygen, to vital organs. These red blood cells are also fragile and break down early causing anemia and fatigue. The newly-approved Adakveo targets the episodes of pain frequently referred to as a pain crisis. “We hear story after story from patients in genuine need of significant pain treatment being denied the compassionate and competent care they desperately need and deserve because many in the medical community are unsure, uncomfortable, or unaware of how to best treat sickle cell patients,” said Dr. Shurney. “Patients in crisis are often questioned about the validity of their symptoms and assumed to be ‘drug seeking’.” This problem is exacerbated by the current opioid crisis. In addition to her role at the SCDAAMI – fondly known as the Sickle Cell Center throughout the community – Dr. Shurney has been a familiar face to many families whose children have been patients at the Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan during her 30-year career providing out-patient care with an emphasis on education and coping strategies. She has worked relentlessly to help kids and their families manage the chronic ailment while enjoying healthier, more active lives. Many of her patients are now adults – something unheard of 30 or 40 years ago. “Thanks to advances like the administration of penicillin to give children with SCD a fighting chance against infection, we’re now seeing many patients living a closer to normal lifespan, but they are still faced with significant challenges,” said Dr. Shurney. “This illness can disrupt every aspect of the family’s life. Children miss school, parents and adults miss work which can result in termination of employment and the resultant financial strain on the family. Frequent trips to the doctor and repeated hospitalization are an additional burden. Many individuals have some level of pain every single day. After 109 years, it is past time to improve life and offer hope to this patient population.” Though numbers are thought to be higher, an estimated 100,000 individuals in the U.S. currently live with some form of the debilitating and life-threatening disease. Comparatively, there are about 30,000 people with cystic fibrosis and 20,000 people (predominantly men) with hemophilia.1 Yet, despite three to five times as many people living with SCD, the disease remains widely unknown, misunderstood, and poorly resourced. “This in the face of the fact that SCD primarily affects people of color - mostly African Americans and Latinos, but also East Indians, Greeks, Italians, individuals from the Middle East, and other people from malaria-afflicted parts of the world,” said Dr. Shurney. The disease is an evolutionary response to malaria: Those with sickle cell trait are less likely to get malaria. But nature’s protective mechanism brought about its own unbearable consequences. “Thanks to the Orphan Drug Act, there are numerous promising clinical trials underway. We are also encouraged by the National Institutes of Health’s Cure Sickle Cell Initiative striving for a genetic cure in the next five to 10 years,” said Dr. Shurney. “The FDA’s approval of Adakveo is a big step in the right direction. Our next challenge is to make sure the medication is accessible to the patients who so desperately need it. Individuals with sickle cell disease are living longer, but we are also focused on improving their quality of life.” 1 Cystic fibrosis and hemophilia statistics courtesy of the Centers for Disease Control at www.cdc.gov 2020 World Sickle Cell Day SAFER launch Adakveo BACK TO THE TOP

our services For more information: Detroit Main Line: (313) 864-4406 Children's Hospital SC Clinic: (313) 745-5613 Sickle Cell Trait Counseling: (313) 595-0280 School/Job Assistance: (313) 595-0541 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) 788-9816 Jackson/Lansing Area: (800) 842-0973 Saginaw/Flint Area: (989) 372-0256 SCDAA-MI provides a range of services to individuals with sickle cell and their families. This includes counseling, support groups, referrals for financial and medical help, college and employment assistance, sending children to summer camp each year. The agency also coordinates newborn screening for all babies born in Michigan. Client assistance WHAT WE DO HERE TO HELP Services We Provide Do you have medical insurance, primary care, a hematologist? Do you need accommodations at school/work? Let us help you manage your life with sickle cell. Read More PARTNER RESOURCES Community Connections We've compiled a handy list of helpful partner resources you can use to help meet basic and emergency needs for yourself and/or your family. Read More COVID-19 INFORMATION What You Should Know Individuals with sickle cell run a higher risk of complications if they contract COVID-19. Get SCD-specific info and guidelines to help stay safe. Read More

about us The Sickle Cell Disease Association of America - Michigan Chapter has been a leader in the sickle cell community since 1971. We are committed to improving the lives of people with sickle cell by keeping our mission at the center of everything we do. OUR HISTORY 200 YEARS Our success all started with the vision of Dr. Charles F. Whitten. His daughter Dr. Wanda Whitten-Shurney continues the work. Read More > OUR IMPACT EVERYBODY COUNTS Numbers, numbers, numbers. But here at SCDAA-MI, every statistic represents a real person we fight for every day. Read More > OUR BOARD LEADERSHIP MATTERS Our board members provide mission and operational oversight with passion, dedication, and expertise. Read More > OUR CEO SICKLE CELL CENTER Our CEO brings passion and drive by seeking to bring awareness in the community and caring for individuals living with sickle cell disease. She maximizes profits and fulfills leadership skills to carry out the mission of the organization. Read More >

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site map Our site is filled with valuable, credible information! You can explore its content here or use our search feature. Home Highlights Coronavirus / COVID-19 Info & Resources Spring E-Newsletter Explore Treatments News & Media Sponsors & Alliances Advocacy & Legislation Locations Detroit Office Contact Us Satellite Offices Map About Us Our History Our Impact Our Board Our Staff Jobs/Careers Services Office and satellite location contacts Our Services Newborn screening Testing and genetic counseling Social work services Career development Public education Summer Camp Covid-19 information Conditions What Is Sickle Cell Disease? Prevalence of Sickle Cell Disease How Do You Inherit Sickle Cell Disease? Explore More In-Depth Information American Society of Hematology Centers for Disease Control National Institutes of Health The Problem with Sickled Cells (video) A Century of Progress A History of Sickle Cell Sickle Cell Trait Sickle Cell Trait Facts Know Your Trait Status Sickle cell trait info from the CDC NCAA Fact Sheet for Student Athletes Testing for sickle cell trait and disease Symptoms & Complicatons Symptoms and Complications Anemia Acute Chest Syndrome Pain Hand-Foot Syndrome Splenic Crisis Infection Stroke Vision Loss More info from the CDC Treatments Feb. 29, 2020 treatment workshop videos Bone marrow and stem cell transplants Medications Penicillin Hydroxyurea Endari Adakveo Oxbryta Transfusions Media News & Multimedia SCDAA-MI Out and About News From Around the Community Patient & caregiver-focused videos Provider-focused sickle cell videos Press Releases E-newsletters News archive Coronavirus / COVID-19 Info & Resources Section 1 Coronavirus / COVID-19 Info & Resources SCDAA sickle cell/COVID-19 guidelines Patient Provider SCD COVID Registry Contact info for Drs. Ahmar Zaidi and Michael Callaghan Assistance navigating resources Section 2 U of M COVID-19 Pandemic Resource Guide Resources for day-to-day living during COVID-19 Locate community resources by zip code Food Mental Health Internet & Device Access Talking with your children about COVID-19 Education and enrichment Ways to connect United Way 2-1-1 COVID-19 risk assessment Meals for children COVID-19 cases in Michigan SCDAA-MI Protocols CDC Recommendations for People at High Risk Section 3 Cheat Codes: Emergency Sickle Cell COVID-19 Podcast How to get tested for COVID-19 COVID-19 symptoms Section 4 Information from Michigan health departments What you need to know about handwashing Statewide resources and information flyer City of Detroit Water Restart Plan Coping with Coronavirus Anxiety Patient Support We’re working to keep you SAFER NIH health maintenance for sickle cell CDC opioid clarification for sickle cell disease NIH treatment guidelines for sickle cell disease Know Your Rights – The Joint Commission Speak Up For Your Rights – The Joint Commission Ask Your Advocate to Speak Up – The Joint Commission Passport to Health Toolkit Tips for trips to ER Clinical trials Sickle cell facts and figures Sickle cell glossary Understanding medical speak Looking for a hematologist? Other informational resources One SCD Voice Cheat Codes Podcast Living with SCD Self-Care Toolkit Get Connected Patient Powered Registry The Sickle Cell Podcast Generation S Get Involved Donate Ways 2 Give Why donate? Donate online Host a Facebook fundraiser Amazon Text to Give Kroger community rewards Check or money order Corporate partnerships 2020 Sickle Cell Matters Walk 2020 Sickle Cell Matters Walk Host Committee Our Donors Advocate 2020 Census information Current and recent issues we’re working on Advocacy training Are you ready to vote? Michigan voter information Our advocacy partners Do you know who represents you? Find your representative. Volunteer Sickle Cell 911 SCDAA sickle cell/COVID-19 provider guidelines SCD COVID Registry ASH COVID FAQs SAFE(R) card and accompanying NIH guidelines NIH and AHRQ ER triage guidelines NIH Sickle Cell Pain Algorithm How to conduct a sickle cell assessment (6 min video) High ER utilization and perceptions of addiction/drug-seeking behavior (3 min video) About the SAFE(R) Initiative CDC clarification on opioids for sickle cell disease NIH Guidelines NIH full recommendations NIH quick guide to recommendations NIH guidelines – acute care breakout (11 complications) ASH pocket guides for acute and non-acute care management Management of acute complications of sickle cell All pocket guides Cardiopulmonary and kidney disease Health maintenance and management of chronic complications Hydroxyurea and transfusion therapy About SAFE(R) SAFE(R) card How to partner Provider and patient anecdotes CDC opioid guidance for sickle cell HHS Asst. Sec’y for health comment Office of Minority Health statistic SCD Education Resources for provider education Improving Emergency Department-Based Care of Sickle Cell Pain American College of Emergency Physicians (ACEP) Resources Acute and Emergency Department Assessment and Treatment Sickle Cell is More Than Pain: Managing Complications Helpful Contextual Videos About Sickle Cell Disease Ongoing Educational Opportunities Events Event Calendar 2020 Sickle Cell Matters Walk Register today Set up your team Sponsor info Vendor reservation Volunteer Warrior Stroll Salute to Legacy Warriors Virtual Summit Leadership and Key Volunteers Who to contact 2019 Event Gallery Cynthia Coles Circle Luncheon, May 18 World Sickle Cell Day, June 19 Sickle Strong Empowerment Circle Balloon Launch, June 19 2019 Sickle Cell Matters Walk 2018 Gallery 2018 Sickle CELLabration World Sickle Cell Day 2018 2018 Sickle Cell Matters Awareness Walk 2018 Cynthia Coles Circle Benefit Luncheon Campaign Awareness Launch More Contact Us Client Feedback Volunteer Search Client Assistance Phone numbers to reach our patient advocate and social work staff throughout the state of Michigan.

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

The Sickle Cell Disease Association of America - Michigan Chapter provides education, assistance, and advocacy for individuals living with and families affected by sickle cell disease. Our services are available throughout Michigan and span lifetime needs. Thank you 2025 Sponsors for helping us reach our goal!! To play, press and hold the enter key. To stop, release the enter key. SCDAA-MI provides education, assistance, and advocacy for individuals living with and families affected by sickle cell disease. Our services are available throughout Michigan and span lifetime needs. Sickle cell is a complex biopsychosocial condition affecting every blood vessel, organ, and system in the body. While its severity impacts each individual uniquely, sickle cell’s most common visible presentation is excruciating, unpredictable pain. However, the condition’s less visible complications of continual hemolytic anemia and vascular and organ damage are silent, but life-shortening, ramifications suffered by every individual with sickle cell. OPPORTUNITIES TO LEARN - SHARE - DISCOVER Anniversary STATE OF SICKLE CELL DISEASE EXPLORE TREATMENTS WAYS TO ENGAGE WITH SCDAA-MI NEWS & MEDIA SPONSORS & ALLIANCES QUESTIONS ABOUT HYDROXYUREA WE'RE NOW WORKING REMOTELY TO HELP PROTECT OUR COMMUNITY. PLEASE CALL FOR ASSISTANCE. THANK YOU! DETROIT OFFICE 18516 James Couzens Fwy Detroit, MI 48235 Mon - Fri: 9 a.m. - 5 p.m. Special Event Hours as Posted 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) 864-4406 School/Job Assistance: (313) 595-0541 Email: info@scdaami.org SATELLITE OFFICES Adult Clinic Caseworker: (313) 864-4406 Benton Harbor/Kalamazoo Area: (269) 927-5629 Grand Rapids/Muskegon Area: (616) 788-9816 Jackson/Lansing Area: (517) 249-3528 Saginaw/Flint Area: (989) 755-7752

our services Top of Page Newborn Screening Testing & Genetic Counseling Case Management Career Development Community Education Case Management Career Development Newborn Screening Newborn Screening As of July 1987, every baby born in the state of Michigan is tested for sickle cell conditions by the Michigan Department of Community Health. This identification allows infants to receive lifesaving penicillin prophylaxis before the disease might be diagnosed from the occurrence of sickle cell disease symptoms. Newborn screening also enables families to receive early disease education and be aware of critical signs and symptoms that may require medical/lifesaving intervention. When an infant is diagnosed with sickle cell trait, the agency provides information to the family about the significance of the condition and free testing for other family members if desired. Return to top of page SCDAA-MI also helps with: Obtaining the required confirmatory test Education and genetic counseling Penicillin management Access to appropriate medical care Testing & Genetic Counseling The function of the testing program is to determine whether a person is at risk for having a child with sickle cell disease. The non-directive counseling program provides detailed and accurate information about sickle cell trait and sickle cell disease for those identified as carriers. This will enable individuals and couples to make informed decisions that they believe are in their best interest regarding family planning. Return to top of page Offices is closed to the public due to Covid. Remote Hours M-F 9 a.m. - 5 p.m. . Case Management Services One of the major functions of the social work program is to assure that clients have access to adequate medical care. Our focus is to provide comprehensive client centered services which lead to empowerment and self-sufficiency. Community Health Workers/Patient Advocates provide public education, social work services and care coordination services to children and adults with sickle cell disease throughout Michigan at Children’s Hospital of Michigan and other local health institutions covering Lansing, Pontiac, Jackson, Ann Arbor, Flint, Saginaw, Kalamazoo, Benton Harbor, Grand Rapids and Muskegon. Services also include trait follow-up and conducting an annual psychosocial assessment for families with appropriate follow-up. The services provided include: Client advocacy Individual and family counseling Disease education Medical referrals Trait follow up Annual psychosocial assessment and follow up Navigating insurance Assistance finding primary care and specialty physicians Assistance with basic needs Return to top of page For assistance with the above matters, please contact your nearest office below or email info@scdaami.org : Metro Detroit (313) 864-4406 Jackson/Lansing Area: (517) 394-7397 Saginaw/Flint Area: (989) 755-7752 Benton Harbor/ Kalamazoo Area: (269) 927-5629 Grand Rapids/ Muskegon Area: (616) 243-1868 Career Development The Career Development Program assists individuals with a sickle cell disease ages 14 and above to plan and achieve a career goal leading to satisfactory employment. We offer clients a six-stage career development course to aid in gainful and satisfactory employment. Other services provided include: Vocational Counseling and Testing Information about Financial Aid College Planning Resume Preparation and Interviewing Skills Assistance with Summer Employment for ages 14-21 Job Replacement and Retention Assistance Summer Reading Enrichment Program for grades K-12 Referral Services Alternative work programs Disability and accommodations assistance for school (including college) and work Resources currently utilized are Michigan Department of Labor and Economic Growth Michigan Rehabilitation Service (MRS) and the Social Security Administration’s Work Incentive program. Return to top of page For career assistance, contact Jerica McBride at 313-864-4406, ext. 109, or email her at mcbridej@scdaami.org . Community Education Our free summer camp experience provides a unique opportunity for our children to gain self-confidence and independence. It also helps parents overcome issues of over protectiveness which may occur when raising a child with a chronic illness. Children ages 8-17 are able to participate in activities including swimming, boating, horseback riding, crafts, archery and much more. The Public Education Program is designed to increase awareness and educate the general public. Our goal is to provide meaningful and accurate information regarding all sickle cell conditions. The following services are available: Group Presentations Media Presentations Health Fair Displays Printed Material Workshops and training sessions Return to top of page Keep up with our latest events . For additional information on services, email info@scdaami.org or call 313-864-4406 Testing & Genetic Counseling Community Education SCDAA-MI’s services are available throughout Michigan and span lifetime needs. For more information: Call 313-864-4406 Email info@scdaami.org Contact our nearest satellite office: Jackson/Lansing Area: (517) 394-7397 Saginaw/Flint Area: (800) 842-0973 Benton Harbor/Kalamazoo Area: (269) 927-5629 Grand Rapids/Muskegon Area: (616) 243-1868

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