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

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

get involved Together our tenacity and commitment have greatly brightened the future for sickle cell: comprehensive pediatric care has become a medical standard throughout most of the U.S., allowing patients to pursue college educations, take on dream careers, marry and welcome extended families. At the same time, many challenges remain: awareness among the adult medical community lags behind pediatric expertise at the expense of patient health. Sickle cell still bears the weight of stigma attached to systemic discrimination. While research is on the uptick, treatments are limited. There is no universal cure. Your support matters in our quest for consciousness, equity, and a cure. Please join us today. DONATE The Sickle Cell Disease Association of America - Michigan Chapter thrives on the support of dedicated patients/clients, staff, volunteers, funders, sponsors, donors, and community partners . We've remained committed to our mission of improving the lives of people living with sickle cell disease for over 50 years. Give today. ADVOCATE This is an exciting time for the sickle cell community as new treatments have recently become available and interest in research to find a cure has spiked. Yet, insurance hindrances, misplaced opioid restrictions, and ongoing systemic discrimination continue to block access to proper care and threaten the lives of patients. Raise your voice for sickle cell with your vote or raise awareness by driving with a purpose! VOLUNTEER There are always volunteer opportunities at SCDAA-MI for assistance at our annual Sickle Cell Matters Walk, encouraging an increased social media presence, office help, committees, and more. Complete our volunteer form to let us know you're interested, and we'll contact you when opportunities arise.

patient support SAFER Initiative NIH Guidelines & Opioids Patient Rights Tools and Tips Hematologist Search More Online Resources We want to make it simpler to find credible, useful information that helps make it a little easier to live with sickle cell. Be sure to scroll all the way to the bottom of the page. There's a lot of great info here, including the CDC's guidance on opioids for sickle cell, your rights as a patient, guidelines to help your doctors with your care, and more. top HEALTH ALERT FROM THE SICKLE CELL DISEASE ASSOCIATION OF AMERICA PATIENT INFO RETURNING TO WORK PROVIDER INFO Have you tested positive for COVID-19? Or do you have a cough with a fever? MICHIGAN WARRIORS ONLY PLEASE: You can contact your Primary Care Physician or proceed to the nearest emergency room in your area. Please respect the docs' time and dedication and only reach out to them if you’re diagnosed with Coronavirus or have a cough + fever. We appreciate them being available to the community this way! We're working to keep you SAFE(R)! Headed to the emergency room/department (ED)? Take this! Be sure to keep our SAFE(R) card on hand. It directs physicians/medical personnel to a sickle cell acute care site made just for them - putting all the current clinical practice guidelines at their fingertips in one place. No need to search the internet: PDF documents and source links are all included. So before you go, click the image to access a printable version. No time to print? Pull up the page on your phone (www.scdaami.org/patient-support) and take a screen shot. When you arrive, present it at the registration desk and note the time. Present another copy at triage. Again note the time. If you're too sick, remember that you have the right to take someone with you to act as your advocate. Let the hospital staff know that's what they're there for. We realize not everyone is familiar with the proper treatment for sickle cell. This can help you receive SAFE(R) care. Be sure to take the SAFER ER survey after each ER visit to let us know about your treatment and care. Contact us with q uestions or feedback. A tip from Twitter: Be sure to document your ED provider's name and course of treatment for future reference. Do the same if you're admitted. When someone takes good care of you, shout out a thank you on IG, Twitter or Facebook and tag #scdaami #sicklecell and the hospital. Let's be heard! SAFER Initiative BACK TO THE TOP NIH - HEALTH MAINTENANCE FOR SCD Click the image for a PDF of the NIH guidelines and recommendations for the health maintenance of people with sickle cell. (Approx. 40 pages) Read and provide a copy to your primary care physician. Click the yellow button to go directly to the full NIH document. Source: National Institutes of Health NHLBI CDC OPIOID CLARIFICATION FOR SCD The CDC clarified its opioid guideline in a letter to ASH stating it was not intended to manage SCD. The CDC refers providers to NIH NHLBI guidelines for care. Click the image for that letter or the yellow button for CDC statement on guideline misapplication. Source: American Society of Hematology NIH - TREATMENT GUIDES FOR SCD Click the image for a PDF of the full NIH clinical practice guidelines for the management of sickle cell disease (161 pages). Click the yellow button for a PDF of the NIH's (National Institutes of Health) 48-page quick guide to those practice guidelines. Source: National Institutes of Health NHLBI NIH Guidelines & Opioids BACK TO THE TOP Patient Rights Know Your Rights - The Joint Commission As a patient, you do have rights and a role regarding your treatment and care. This brochure has questions and answers to help you learn about your rights and role as a patient. Knowing your rights and role can help you make better decisions about your care. (Image links to brochure) Source: The Joint Commission Speak Up For Your Rights - The Joint Commission As a patient, you have the right to be informed about and make decisions regarding your care. You also have the right to care that is free from discrimination, as well as the right to have a patient advocate. Learn about the different rights you have as a patient. (Image links to short video) Source: The Joint Commission Ask Your Advocate to Speak Up - The Joint Commission As a patient, you have a right to have a patient advocate - a friend, family member, or whoever you designate. Your advocate can be a partner in your care, helping you through every step of your treatment. Watch this video and ask your advocate to Speak Up™! (Image links to short video) Source: The Joint Commission BACK TO THE TOP Tools and Tips PASSPORT TO HEALTH TOOLKIT Dr. Wanda Whitten-Shurney's Passport to Health Toolkit is a great source of information for maintaining your health. (Join us for an educational program to receive the backpack that goes with it. *While supplies last!) Source: Dr. Wanda Shurney TIPS FOR TRIPS TO ER Emergency room visits are a frequent course of action for people with sickle cell. The CDC provides this handout with suggestions for talking with physicians and navigating the experience. Source: Centers for Disease Control CLINICAL TRIALS Research into sickle cell treatments is at an all-time high. New possibilities move through a series of studies and approvals that include clinical trials. Interested in participating? Here's a list of current NIH-funded trials. Source: National Institutes of Health BACK TO THE TOP SICKLE CELL FACTS & FIGURES The American Society of Hematology (ASH) provides this clear and thorough handout with facts and figures to help educate yourself and others about the biology and impact of sickle cell disease. Source: American Society of Hematology SICKLE CELL GLOSSARY A diagnosis of sickle cell comes with its own language. If you're newly-diagnosed, the words can be overwhelming. This glossary will serve as both an introduction and a refresher for those who need it. Source: Missouri Dept. of Health & Senior Services UNDERSTANDING MEDICAL SPEAK Have you encountered unfamiliar terms used in your medical care? If so, you're not alone. Here you'l find definitions in every day language to help you better understand your condition. Source: Medical Library Association BACK TO THE TOP Looking for a hematologist? Try this zip code-based search . (We do not endorse the physicians listed. Use proper care in researching their expertise.) You can also contact our office for suggestions provided by existing patients/clients. Hematologist Search More Online Resources Other informational resources

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

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!