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Catch up on news and information from the SCDAA-MI E- newsletters Read the latest news SUBSCRIBE TO OUR E-NEWS September 2020 Special Edition Read web version ​ Download PDF Summer 2020 (August) Read web version ​ Download PDF World Sickle Cell Day Alert Read web version ​ Download PDF Spring 2020 (April) Read web version ​ Download PDF January 2020 (Winter) Read web version ​ Download PDF November 2019 Read web version ​ Download PDF

our services For more information: Detroit Main Line: (313) 864-4406 Children's Hospital SC Clinic: (313) 745-5613 Sickle Cell Trait Counseling: (313) 864-4406 School/Job Assistance: (313) 595-0541 Email info@scdaami.org ​ Contact our nearest satellite office: Detroit Area: (313) 613-7327 Benton Harbor/Kalamazoo Area: (304) 404-4229 Grand Rapids/Muskegon Area: (616) 788-9816 Jackson/Lansing Area: (517) 249-9528 Saginaw/Flint Area: (989) 372-0256 SCDAA-MI provides a range of services to individuals with sickle cell and their families. This includes counseling, support groups, referrals for financial and medical help, college and employment assistance, sending children to summer camp each year. The agency also coordinates newborn screening for all babies born in Michigan. WHAT WE DO HERE TO HELP Services We Provide Do you have medical insurance, primary care, a hematologist? Do you need accommodations at school/work? Let us help you manage your life with sickle cell. Read More PARTNER RESOURCES Community Connections We've compiled a handy list of helpful partner resources you can use to help meet basic and emergency needs for yourself and/or your family. Read More CORONAVIRUS / COVID-19 What You Should Know Individuals with sickle cell run a higher risk of complications if they contract COVID-19. Get SCD-specific info and guidelines to help stay safe. Read More

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OUR PARTNERS ​ SCDAA Member Organization As a Member Organization of Sickle Cell Disease Association of America, we are positioned to work with other local organizations and with the National office to execute events, fundraisers, programs, and projects. For more information about our national agency, click here (insert logo and link to website). Our achievements are possible because of the continued commitment of our dedicated staff, Board of Directors, and other volunteers. We also wish to acknowledge the financial support from the state of Michigan Department of Health and Human Services, Federal Health Resource [i]and Services Administration (HRSA), City of Detroit- Planning & Development Department and the many agencies, organizations and individuals which have enabled us to provide free services for our clients. The Cynthia Coles Circle of Friendship Baptist Church has been a steadfast supporter of our organization as well as Community Health Charities. We could not have met the challenges presented by sickle cell conditions without the assistance we have received from the total community. We are deeply grateful for your generous support over the years and we intend to continue to be worthy of it. Our promise is to continue delivering dedicated comprehensive services, with true compassion. ​ CALL TO ACTION ​ If you would like to join us in improving the lives of individuals living with sickle cell disease, please take a moment to send a tax deductible contribution. Thank you!

SICKLE CELL 911: FAST ACCESS TO GUIDELINES & BETTER CARE Empowering medical professionals to implement evidence-based sickle cell action. Amplifying the patient's voice in care. OPIOIDS & SCD NIH GUIDELINES COMPLICATIONS ASH POCKET GUIDES SCD EDUCATION SICKLE CELL 911 About the SAFE(R) Initiative Access/download a compilation of the NIH guides specific to SAFE(R). PARTNER WITH SAFER SAFE(R) stems from the sad and dangerous reality that many individuals with sickle cell opt to "wait out" an acute episode as long as possible rather than endure a traumatizing trip to the ED where they're likely to be stigmatized and/or undertreated. This treatment time lost equates to eventual organ failure or other tragic complications. Central to the SAFE(R) Initiative is the Sickle Cell 911 (#SCD911) card, the key to a site dedicated to acute sickle cell care, containing NIH guidelines in an easy-access form. For providers, Sickle Cell 911 serves as a portable portal to evidence-based practices, knowledge and resources for treating SCD and its complications. For the patient, it's evidence-based back up of information many have already shared to no avail. Or details they're too sick to effectively relay by the time they arrive in your ED. For us, it's a small way to take big steps toward catching up the adult medical community on strides pediatric practitioners have been making for the last 50 years: We've succeeded not only in getting sickle cell babies beyond the critical first five years, but we've now catapulted them into adulthood and find there is little safety net for their treatment and care. This reality shouldn't exist. You can be the change. "Only about 1 in 4 patients with sickle cell disease receive the standard of care described in current guidelines, and many studies have shown that patients do not receive treatment for their pain as soon as, or in appropriate doses as, other patients." -HHS Office of Minority Health #SickleCell911 #BlackPatientLivesMatter #EliminateHealthDisparities Join forces with SCDAA-MI! Assure Michigan sickle cell patients they're SAFE(R) in your facility than at home because you'll adhere to CDC and NIH guidelines in their care. ​ Here's what you can do: ​ Assess your ED's readiness to provide guideline-adherent emergency sickle cell care using ASH's approach . (PDF ) Let hospital and ED staff know that we're sending patients out with their SCD911 cards. Contact us to set a face-to-face meeting with your practice or hospital leadership and address any concerns. Give us the opportunity to speak directly with physicians, specialists and other medical professionals so we can discuss the burden of sickle cell, dispel common myths, and offer tips on adhering to the NIH guidelines. Spend some time with us. Meet our patients, their families, our staff and supporters. Put a face to the discussion. Let us know how you'd like to partner. ​ #ThankYou For more information, contact Stefanie Worth at the Sickle Cell Disease Association of America - Michigan Chapter. “We must ensure that people living with sickle cell disease don’t become collateral damage in the fight against the opioid overdose epidemic.” “During a pain crisis, SCD patients often suffer more than they should because of the complex nature and mechanisms of acute and chronic sickle cell pain, combined with a lack of understanding by health care professionals of the unique needs of these patients. We are committed to protecting their access to the appropriate and safe use of opioids, while developing more effective ways to prevent and treat SCD pain.” -Adm. Brett Giroir, MD, HHS Assistant Secretary for Health Visit our Sickle Cell 911 provider page to learn more about sickle cell and access information about current clinical practice guidelines. ​ here SOURCES: https://www.minorityhealth.hhs.gov/sicklecell/, https://www.ashclinicalnews.org/spotlight/feature-articles/the-other-opioid-epidemic/, https://ashpublications.org/hematology/article-lookup/doi/10.1182/asheducation-2017.1.412

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

2019 Photo Gallery 2018 Photo Gallery 2021 photo galleries Awareness Campaign Launch This year for World Sickle Cell Day the Sickle Strong Adult Support Group hosted a lantern release to where we all could shine a light for individual living with sickle cell and to honor the memory of the beautiful ones we loss. Please enjoy these highlights! ​ Thank You! ​ (Is your photo/video missing from this collection? If so, email it to us.) ​ ​ ​

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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. ​ Text to give: Text FIVE to 52000. $5 will be added to your phone bill. (Message and data rates apply.) ​ 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 nearly 3,300 people in Michigan living with sickle cell and approximately 1,700 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 SPONSORSHIPS QUESTIONS?

sickle cell conditions 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. SCROLL 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

Additional resources to support your needs during the COVID-19 pandemic Food Mental Health Internet Talking With Kids Education Ways to Connect 2-1-1 Top Job Info Locate various community resources by zip code https://navigator.familydoctor.org/ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Food Locate food banks by zip code https://www.feedingamerica.org/find-your-local-foodbank Several school districts are offering “grab and go” food pick up for students during the COVID-19 outbreak. These organizations are assisting as well: Gleaners Food Bank Forgotten Harvest Yad Ezra Lighthouse Food Pantry City of Detroit Food Pickup ​ Mental Health 24/7 365 Disaster Distress Hotline to assist with emotional distress due to pandemic Free online COVID-19 support group Coping With Coronavirus Anxiety - Reading from Harvard Health Be The Match® is now offering free counseling services to sickle cell warriors and their loved ones. One of their licensed social workers can provide you with one-on-one support for personal and emotional issues. Request a connection today. ​ ​ Internet & Device Access FCC program for eligible households to provide low cost telephone and broadband internet service (Michigan is a participating state) Some internet providers are offering free services to low-income families and households with students. Free Comcast Xfinity internet: Comcast Xfinity is currently offering its Internet Essentials program free for two months to new customers. The internet provider is also automatically increasing speeds for all Internet Essentials customers. Comcast Xfinity Wi-Fi hotspots are also open and free to use by anyone. Free internet for students from Charter Spectrum: Households with students K–12 or university students can sign up for a new Charter Spectrum internet account to get the first two months of internet with speeds up to 100 Mbps for free. Installation fees will be waived for those who qualify for the offer. Call 1-844-488-8395 to enroll. Spectrum Wi-Fi hotspots are also currently open and free to use. Free internet for students from Altice: Altice internet providers Suddenlink and Optimum are offering 60 days of free internet service for households with K–12 or college students. Internet speeds are up to 30 Mbps if you do not already have access to a home internet plan. To sign up, call 1-866-200-9522 if you live in an area with Optimum internet service, or call 1-888-633-0030 if you live in an area with Suddenlink internet service. Free low-income internet from Cox: Until May 12, 2020, Cox is offering the first month of its low-income internet program, Connect2Compete , for free. The internet service is also providing free phone and remote desktop support for technical support during that time. AT&T: https://www.att.com/help/covid-19/ Talking with your children about COVID-19 Talking to Children About COVID-19: National Association of School Psychologists Coping with Stress During Infectious Disease Outbreaks : Substance Abuse & Mental Health Services Administration Talking with Children about Coronavirus : CDC Helping Children Cope with Emergencies : CDC How to Talk to Your Kids About Coronavirus : PBS Kids Should children be gathering while school is not in session? CDC Recommendation : Discourage children and teens from gathering in other public places while school is dismissed to help slow the spread of COVID-19 in the community Coronavirus is Here. Should Kids Still Have Playdates ? Fatherly Magazine ​ Educational Websites and Apps Guidance and a variety of good online resources are available on the Common Sense Media website. ​ All Subjects ABC Mouse (Free 30 day trial) Khan Academy Khan Academy Kids Wonderopolis Parent Toolkit Literacy Scholastic Learn at Home Starfall Audible (free audio stories for kids) Math Code.org Tynker - Free coding courses for all grades Solve Me Puzzles - puzzles that use mathematical thinking PBS Kids Math Games Science & Social Studies Mystery Doug National Geographic Kids Science Journal for Kids ​ Enrichment Activities ​ Fun Games PBS Kids Typing.com Movement & Mindfulness Headspace Go Noodle Mindfulness Moments Virtual Tours Museum Virtual Tours NASA Images and Video Library Cranbrook Art Museum virtual tour ​ Ways to connect Adobe Connect (Free 90 day trial) Facetime Skype Google Hangouts ​ ​ ​ United Way 2-1-1 United Way for Southeast Michigan's 2-1-1 service provides referrals to programs in Wayne, Oakland, Macomb, Washtenaw, Monroe and Lapeer counties, connecting users with more than 30,000 service providers throughout the state. You can get information online at United Way 2-1-1 , or by dialing 2-1-1 (or 1-800-552-1183 ). ​ ​ Returning to Work Michigan information for employers and employees Michigan guidance for manufacturing workers returning to work Template letters from SCDAA for physicians to provide patients and caregivers ​ Food resources Mental Health resources Internet and device access Talking with your kids Education and enrichment Ways to connect United Way 211 Back to the top Back to the top Back to the top COVID-19 Information From Michigan Health Departments ​ Berrien County here Genesee County here Ingham County here ​Kent County here ​Lenawee County here Macomb County here Michigan Department of Health & Human Services here Oakland County here Saginaw County here Washtenaw County here Wayne County here MI Health Depts Job Info