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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!

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

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 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

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

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Due to the COVID-19 pandemic, we're not holding any face-to-face events at this time. Visit this page to keep up with our virtual activities. 2019 holidays Camp Cancellation2 WSU 02282020 Whitten-Shurney MD Register2 GivingTuesdayNow Walk promo IMG_0946 SCDAAMI Stabenow meeting Ahmar TEDx IMG_0943 iseeu 2024 Events Mark your calendar and join us for fun, educational, advocacy, and celebratory events throughout the year. (Virtual for now, of course.) SCDAA-MI Upcoming Events Flyers will be uploaded in the future. WORLD SICKLE CELL DAY - WEDNESDAY, JUNE 19, 2024 THE ANNUAL SICKLE CELL MATTERS AWARENESS WALK - SATURDAY, SEPTEMBER 14, 2024 (The Charles H. Wright Museum) FLINT MICHIGAN SICKLE CELL AWARENESS WALK - SATURDAY, SEPTEMBER 7, 2024 Have questions? Need info? Want to send an idea for an educational topic? Contact us at info@scdaami.org or 313.864.4406.

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

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: Patient Advocate & Community Health Worker - Detroit Office The Sickle Cell Disease Association of America - Michigan Chapter is an Equal Opportunity Employer. jobs/ careers

WAYS TO GIVE Donate online here Host a Facebook fundraiser: Birthdays, anniversaries, holidays, Mondays - any day is a good day to rally your Facebook friends around our cause. Become a Sponsor Every year we host our Sickle Cell Matters Annual Walk that is either virtual or in person at the Charles H Wright African American Museum in Detroit, Michigan. The proceeds for this fundraiser are designated to our client assistance funds, tutoring and camp for individuals living with sickle cell conditions. Click here for more information about how to become a sponsor. Donate and Advocate for Sickle Cell Disease in one easy step: Support individuals and families affected by sickle cell disease by purchasing a Michigan Sickle Cell Awareness license plate . Click here to learn more about it . Kroger: Register your Kroger Rewards Card online at Kroger.com/communityrewards Enter SICKLE CELL DISEASE ASSOICATION OF AMERICA MI CHPT or 91452. (Sorry, but that is how it's spelled on that site!) Individual purchases will begin counting towards your organization within 7-10 days of registering the individual rewards cards on-line. Every time you shop for groceries and swipe your card, SCDAA-MI automatically starts earning a rebate. Kroger limits your quarterly household contribution to $300. By check or money order, mail to: SCDAAMI, 18516 James Couzens Fwy, Detroit MI 48235 CORPORATE PARTNERSHIPS 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. For more information, contact Craig Bradley, Director of Operations & Outreach at 313-864.4406, ext. 111. WHY DONATE? With more than 4,000 people in Michigan living with sickle cell and approximately 3,000 of those people living in the metro Detroit area, our programs and services impact individuals, their families, and the community at large. Sickle cell affects three times as many people as cystic fibrosis in the U.S., yet receives approximately one-third the funding. Your support helps provide year-round education for physicians, patients and caregivers; appropriate medical care, trait testing campaigns, self-sustainability work, and more. Modern medicine has the capacity to help people with sickle cell thrive. Individuals living with the condition want improved quality of life and it’s our mission to make that happen. ways 2give QUICK ACCESS MENU DONATE FACEBOOK KROGER LICENSE PLATE SPONSORSHIPS QUESTIONS?

Ways to participate in our virtual walk 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. The COVID-19 pandemic will keep us from walking together, but the reasons we walk are still present every day in every individual living with sickle cell. We still need your help to meet the needs of our community. How Our Virtual Walk Works “Join where you are and move how you choose” is the theme of this year’s Sickle Cell Matters Virtual Walk. This means you can participate from anywhere – home, a favorite landmark, nearby park, or your local drop-off election ballot box . (Hint!) Everyone who registers, donates, or starts a team will receive a pedometer, but you’re not limited to walking. Change it up! Transfer the 30-40 minutes you would have used to walk with our group to a session of Zumba, yoga, golf, dancing or yes, walking. We encourage you to start on Sept. 14 to help us promote the event. Post photos or videos of your activity to your social media accounts using #SickleCellMattersWalkMI #SickleCellLivesMatter #SickleCellMichigan. Have fun with it – show off your steps, shout out your team, team members, and the warrior you’re participating for. Then on Saturday, Sept. 19, join us on Facebook @sicklecellmichigan for the online celebration beginning at 10 a.m. Right click to download, save and share this graphic! Contests & Prizes Right click to download, save and share this graphic! Everyone who supports our 2020 Sickle Cell Matters Virtual Walk by registering, donating, fundraising, or starting a team by 9/5 will receive a pedometer as a thank you and reminder that fitness – movement – is important for all of us every day. Everyone who signs up as a fundraiser or creates a team by 9/5 will also be entered into a giveaway for a $100 gift card. We’ll recognize the two teams that raise the most money by Sept. 12. Team captain of the top team receives a $100 gift card. The second place team captain will receive a $50 gift card. The team captain with the most walkers as of Sept. 12 will receive a $100 gift card. We’re expanding our annual T-Shirt Contest to include posters this year. Create a design supporting #SickleCellLivesMatter. Show your poster or wear your T-Shirt in your virtual walk photos and videos. Enter your T-Shirt and poster designs in the contest by Sept. 5 for a chance to win a $100 gift card. Winners will be announced on Sept. 19. (You must be registered for the walk, donate, or be signed up as a fundraiser or team captain to be eligible for entry.) Tribute to Fallen Warriors We offer our heartfelt condolences to all the friends, families and loved ones of individuals with sickle cell who’ve passed away over the years. This year, again, we’ll pay tribute to the lives of those we've lost here in Michigan. To include your loved one in our tribute, please send the following to info@scdaami.org no later than Sept. 5: Name of the individual who passed away, dates of birth and death, and a photo. Right click to download, save and share this graphic! Salute to Legacy Warriors Right click to download, save and share this graphic! We’re inviting all individuals with sickle cell aged 40 and older to join our 2020 salute. Consider this an extra birthday celebration! The honors are open to all warriors, no matter where you live. Sign up here and send a photo of yourself to info@scdaami.org with the subject line “Legacy Warrior.” Be sure to include your name in the email. #WarriorsWipeItDownChallenge We’re inviting all sickle cell warriors to join in a special #WipeItDown challenge for our virtual walk. Post to your social media using any of the day’s hashtags: #SickleCellMattersWalkMI #SickleCellLivesMatter #WarriorsWipeItDown Right click to download, save and share this graphic! #SickleSlide Calling the hustle crowd! Take on the Sickle Slide to raise consciousness around sickle cell in a fun and active way. Post your video and tag us @sicklecellmichigan. Be sure to post a fact or two about your life with sickle cell and use #SickleSlide and #SickleCellMattersWalkMI. You could be featured in our Walk day celebration! howwalkworks contests legacywarriors fallenwarriors wipeitdown sickleslide Check our leaderboard frequently to see how your campaign is doing and what the competition is up to. For additional information, please contact the following SCDAA-MI staff for specific assistance or call (313) 864-4406: Registration, team setup or technical issues - email Kristal Johnson Sponsorships - email Stefanie Worth Vendor Information - email Tracie Conic