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SICKLE CELL DISEASE Association of America Michigan Chapter (SCDAAMI) Enter Site Contact Us Donate

WAYS TO GIVE Donate online here Host a Facebook fundraiser: Birthdays, anniversaries, holidays, Mondays - any day is a good day to around our cause. rally your friends Facebook Amazon: By selecting the Sickle Cell Disease Association of America - Michigan Chapter as your charitable recipient, Amazon will donate .5% of every eligible purchase to SCDAA-MI. All you have to do is shop. Amazon handles the rest. Give while you shop, through Amazon Smile. Text to give: $5 will be added to your phone bill. (Message and data rates apply.) Text FIVE to 52000. Kroger: Enter SICKLE CELL DISEASE ASSOICATION OF AMERICA MI CHPT or 91452. 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. Register your Kroger Rewards Card online at Kroger.com/communityrewards (Sorry, but that is how it's spelled on that site!) 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. We’re currently recruiting sponsors at the Charles H. Wright Museum of African History from 9 a.m. - noon. for our on Sept. 19 2020 Sickle Cell Matters Virtual Walk ​ , Co-host of "Sunday Morning Inspiration" on MIX 92.3 FM and Professor of English Literature at the University of Michigan-Dearborn. Our Honorary Chair is Deborah Smith Pollard , Pediatric Oncologist/Hematologist, Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan, and known to many as "Dr. Z". Our Honorary Co-Chair for the event is Dr. Ahmar Zaidi Many of our 2020 Sickle Cell Matters Virtual Walk sponsorships provide year-round engagement opportunities for companies and employees. for more information. Click here ​ We're also looking for community partners to serve on our Sickle Cell Matters Walk Host Committee. for information. Click here ​ For more information, contact Stefanie Worth, Director of Operations & Outreach at 313-864.4406, ext. 111. ​ WHY DONATE? With nearly 3,000 people in Michigan living with sickle cell and approximately 1,600 of those people living in the metro Detroit area, individuals, their families, and the community at large. our programs and services impact 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 AMAZON KROGER SPONSORSHIPS QUESTIONS?

SCDAA-MI SICKLE CELL DISEASE ASSOCIATION OF AMERICA - MICHIGAN CHAPTER 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. 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. Watch the Virtual Walk program 2020 was our best fundraising walk ever! Thanks for your support! Need Help Call or email us if you need help. Thanksgiving flyer SCD COVID-19 health advisories from SCDAA's MARAC Virtual Fall Camp Apply to North Star Reach's virtual fall camp Feb 29th Treatment Workshop Dr. Shurney and Dr. Z provided a day of great info at our Treatment Workshop! Ask Your Advocate to Speak Up! Learn more about your rights as a patient with these useful resources from The Joint Commission. CDC SCD Opioid Clarification Graphic In Feb. 2019, the CDC issued a clarification of its opioid guidelines as related to sickle cell. Those guidelines were not intended for the management of SCD and medical professionals should refer to NIH NHLBI guidelines for proper administration of narcotics. SAFER Sickle Cell 911 We're keeping patients SAFE(R) by working with physicians to implement guideline-based care. Watch the Virtual Walk program 2020 was our best fundraising walk ever! Thanks for your support! Need Help Call or email us if you need help. Thanksgiving flyer SCD COVID-19 health advisories from SCDAA's MARAC Virtual Fall Camp Apply to North Star Reach's virtual fall camp Feb 29th Treatment Workshop Dr. Shurney and Dr. Z provided a day of great info at our Treatment Workshop! Ask Your Advocate to Speak Up! Learn more about your rights as a patient with these useful resources from The Joint Commission. CDC SCD Opioid Clarification Graphic In Feb. 2019, the CDC issued a clarification of its opioid guidelines as related to sickle cell. Those guidelines were not intended for the management of SCD and medical professionals should refer to NIH NHLBI guidelines for proper administration of narcotics. SAFER Sickle Cell 911 We're keeping patients SAFE(R) by working with physicians to implement guideline-based care. 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. OPPORTUNITIES TO LEARN - SHARE - DISCOVER SICKLE SABBATH ANY SUNDAY 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) 595-0280 School/Job Assistance: (313) 595-0541 Email: info@scdaami.org SATELLITE OFFICES Adult Clinic Caseworker at DMC: (313) 864-4406 Benton Harbor/Kalamazoo Area: (313) 505-4081 Grand Rapids/Muskegon Area: Jackson/Lansing Area: (800) 842-0973 (616) 788-9816 Saginaw/Flint Area: (989) 372-0256 THANK YOU TO OUR FUNDERS & SPONSORS Mostrar Mais

our history The History of the Sickle Cell Disease Association of America – Michigan Chapter The Passion Continues ​ 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 ​ when renowned pediatrician and sickle cell expert founded the Sickle Cell Detection and Information Program. The agency’s creation was just one achievement on Dr. Whitten’s lengthy list of accomplishments. SCDAA-MI’s story began in August of 1971 at Kirwood Hospital Dr. Charles F. Whitten In 1960, he and Dr. Charles Wright founded the African Medical Education Fund. Nearly a decade later, he instituted Wayne State University’s Post Baccalaureate Enrichment Program after noticing that black students often needed additional preparation for medical school. Then in 1971 he formed the “Sickle Cell Center,” and along with Dorothy Boswell formed the National Association for Sickle Cell Disease (now the Sickle Cell Disease Association of America) that same year. He led the national organization for nearly 20 years. In 1956, he’d been selected as clinical director of pediatrics at Detroit Receiving Hospital – the first African American in the role. of improving the lives of individuals with sickle cell disease. Meanwhile, it has also grown in scope in response to evolving medical and social demands. Still situated on Detroit’s northwest side, in the original building of its founding, the agency completed purchase of its interconnected stretch of buildings in 1990. The structure contains 14 offices, a laboratory where free trait and disease screening is conducted, a conference room, and an educational wing. There is also ample outdoor space for client activities. SCDAA-MI is one of the only community-based organizations in the country responsible for overseeing a state-wide sickle cell program. Over its 48 year history, the SCDAA-MI has held fast to its mission – stepped away from her role as Director of the Comprehensive Sickle Cell at Clinic Children’s Hospital of Michigan and assumed leadership of SCDAA-MI. Currently its CEO & Medical Director, she continues to steer the agency and manages to carve out time to care for newly-diagnosed infants at CHM as well. After Dr. Whitten passed away in 2008, his daughter Wanda Whitten-Shurney, M.D. – a beloved pediatrician as well ​ whose children have received their out-patient care from her during her 30-year career. She has worked relentlessly to help kids and their families manage sickle cell, emphasizing education and coping strategies to help individuals enjoy healthier, more active lives. She also a member of the . Her passion for sickle cell patients and the people who love them continues. Dr. Shurney has been a familiar and caring face to hundreds of families National Heart, Lung and Blood Institute Sickle Cell Advisory Committee LEARN MORE ​ ​ Dr. Charles F. Whitten Black History Month Sickle Cell Pioneers Dr. Whitten's papers acquired by NIH library Dr. Wanda Whitten-Shurney Read more about Dr. Shurney in our media section

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. ​ We currently have no open positions available at this time. If you would like to volunteer, please email us at info@scdaami.org ​ The Sickle Cell Disease Association of America - Michigan Chapter is an Equal Opportunity Employer. jobs/ careers

Sickle Cell Disease Association of America - Michigan Chapter ​ 2019-2020 Board of Directors Chairperson Kym L. Worthy Prosecutor, Wayne County District 1st Vice Chair, Tracey Moorehead, Teacher, Southfield Public School , 2nd Vice Chair Amyre Makupson Retired News Anchor, WMYD Detroit Treasurer Ms. Cheryl L. Haskett, Finance Director & Consultant, YDB, Inc. Secretary Kathleen Neumann, Retired Regonal Director, Judson Center ​ Assistant Secretary Sharada Sarnaik, M.D., Director, Comprehensive Sickle Cell Clinic Children’s Hospital of Michigan Versetta Brown Eaddy Computer Lab Manager/Technical Support Professional Barbara Cushing, M.D. Retired Pediatric Hematologist, CHM LeWanda Gipson Deputy Director, Matrix Human Services ​ Deborah Smith-Pollard, Ph.D. Associate Professor, U of M Dearborn ​ Beverly Watkins Systems Administration, Toyota ​ our board

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 SICKLE CELL CENTER 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 STAFF 200 YEARS The SCDAA-MI staff brings more than 200 years of experience to its mission of changing the world of sickle cell. 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 SICKLE CELL CENTER 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 STAFF 200 YEARS The SCDAA-MI staff brings more than 200 years of experience to its mission of changing the world of sickle cell. Read More >

Sickle Cell Disease Association of America - Michigan Chapter Staff Tracie L. Conic, M.A., B.S.W ​Director of Client Services/HIPAA Compliance Officer ​ ​ Tonya Ashwood-Malone Executive Assistant/Data Manager Michael Copeland, B.S. Community Health Worker/Patient Advocate Grand Rapids/Muskegon Area ​Vilma Escamilla-Duran Program Assistant Patricia Ewell Laboratory Technologist Ben Frazier, B.S.W. Community Health Worker/Patient Advocate Saginaw/Flint Area Jesse Goodwin, Ph.D. Laboratory Director ​ Melanie Greer, B.S. Community Health Worker/Patient Advocate Benton Harbor/Kalamazoo Area ​ Darlene Hunt Maintenance/Courier Kristal Johnson-Cobb Administrative Assistant Cree King Newborn Screening Assistant ​ Jerica McBride, M.A. Education/Career Coordinator Richard Reed Finance Manager Khaleeda Robinson, B.S. Community Educator/Trait Counselor Albert Zachariah Systems Consultant Wanda Whitten-Shurney, M.D. CEO & Medical Director our staff

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. 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? You can call Dr. Z (Dr. Ahmar Zaidi) at 248-797-9936 or Dr. Mike (Dr. Mike Callahan) at 248-953-5250. Please respect the docs' time and dedication and only reach out to them if you’re diagnosed with Coronavirus or have a cough + fever. MICHIGAN WARRIORS ONLY PLEASE: ​ 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 to take someone with you to act as your advocate. Let the hospital staff know that's what they're there for. you have the right ​ 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 after each ER visit to let us know about your treatment and care. SAFER ER survey uestions or feedback. Contact us with q 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! 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 BACK TO THE TOP 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 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 . (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. zip code-based search Other informational resources