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  • 2020 Sickle Sabbath | -scdaami-

    2020 Sickle Sabbath Any Sunday Right click on the image above to download a photo you can use on your social media pages. Sickle cell disease can affect anyone of any nationality or ethnicity. ​ We welcome all faiths to join us in educating their members about the prevalence of sickle cell disease, how it's inherited, and why it all starts with being certain about your sickle cell trait status. Support us any time of the year! Right click on the image above to download a you can pdf flyer share with your congregation. Right click on the image above to download a you can pdf fact sheet share with your congregation. Right click on the image above to download a . Please complete and return this form to our office after your service pdf participation form . If you have any questions or need additional information, please email us at or call 313-864-4406. info@scdaami.org Thank you to the congregations that supported Sickle Sabbath as part of our 2020 World Sickle Cell Day celebration ! If you have not submitted your participation form, please download and return your information today so we can say thank you! June 20-21, 2020 World Sickle Cell Day Sickle Sabbath Participation Form

  • SAFERProvider | -scdaami-

    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 ABOUT SAFE(R) SICKLE CELL 911 Resources for Provider Education a compilation of the NIH guides specific to SAFE(R). Access/download PARTNER WITH SAFER Improving Emergency Department-Based Care of Sickle Cell Pain "Presented in this article are 4 tenets of implementing guideline-adherent emergency sickle cell care gleaned from the available literature and continuous quality improvement efforts at our institution." . . ."Application of the principles discussed within can improve patient and provider satisfaction, quality, and safety." (From the American Society of Hematology) PDF Online American College of Emergency Physicians ACEP's Emergency Department Sickle Cell Care Coalition offers a substantial list of training and informational resources for medical professionals providing treatment in emergency and acute care settings . here Acute and Emergency Department Assessment and Treatment - a webinar from NIH, OMH and ACEP. Sickle Cell Disease Care in the Emergency Department: Improvement Initiatives and Ongoing Research (1 hour) A presentation from Duke University and The Johns Hopkins School of Medicine SCD Core Concepts for the Physician and Nurse - Sickle Cell Pain (PowerPoint): A focus on assessment and treatment. NOTE: The interviewer uses the term "sickler" throughout the podcast. This term in NOT well-received by sickle cell patients here. Emergency care for sickle cell – Podcast (1 hour): Sickle Cell is More Than Pain: Managing Complications - PDF download Major Complications of Sickle Cell Disease and Nursing Implications Sickle Cell Disease: When to Transfuse Learn about indications for blood transfusion in patients with sickle cell disease, the complications associated with these transfusions, and how you can help reduce the risk for these complications in your patients. Sickle Cell Disease TeleECHO Clinic - Didactic Video Series Project ECHO (Extension for Community Healthcare Outcomes) is an internationally recognized telementoring innovation that build clinician knowledge in diagnosing and treating complex disorders. Project ECHO connects local clinicians with experts from sickle cell centers to learn skills necessary to deliver high quality sickle cell disease care using this proven telementoring model. Via Washington University School of Medicine in St. Louis. Helpful Contextual Videos About Sickle Cell Disease Dr. Ahmar Zaidi, pediatric hematologist/oncologist at the Comprehensive Sickle Cell Clinic at Children's Hospital of Michigan discusses the systemic disparities that further threaten the well-being of people who live with sickle cell's life-threatening impact. Dr. Ahmar Zaidi at TEDxDetroit (10 min): disease across the globe and the role of community physicians in managing the disease via HCP Live Peer Exchange (5 min) Experts address the prevalence and overall burden of sickle cell 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. Dr Ahmar Zaidi on Efforts Needed to Address Complications of Sickle Cell Disease (1 min): Ongoing Educational Opportunities "This practical toolkit provides clinicians with materials and resources to engage with patients and educate them about sickle cell disease. Use the toolkit with patients individually or in group education settings to help build a strong foundation for shared decision-making regarding treatment goals and preferences, transitions of care, and individualized treatment plans." . Learn more The U. S. Department of Health and Human Services Office of Minority Health offers the Sickle Cell Disease Training And Mentoring Program (STAMP) a free sickle cell disease telehealth series for primary care providers. . Learn more SOURCES: Medscape https://www.medscape.com/viewarticle/891436?src=par_cdc_stm_mscpedt&faf=1; Ward, R, Helman, A, Foote, J. Emergency Management of Sickle Cell Disease. Emergency Medicine Cases. August, 2015. Accessed 02-18-2020; American College of Emergency Physicians, Accessed 04-28-2020. Prime Education LLC, Accessed 09-11-2020. https://emergencymedicinecases.com/emergency-management-of-sickle-cell-disease/. https://www.acep.org/by-medical-focus/hematology/sickle-cell/resources/. https://primeinc.org/cme/monograph/3412/Transforming_Clinical_Outcomes_for_Patients_with_Sickle_Cell_Disease:_The_Power_of_Collaborative_Patient-Provider_Partnerships?utm_source=scdaa&utm_medium=email1&utm_campaign=83pr201.

  • Our Staff | -scdaami-

    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

  • Our Impact | -scdaami-

    our impact of our 2018-19 Community Impact Report. Download a PDF

  • 2020 Walk Sponsors and Vendors | -scdaami-

    Sponsor Information Donate/Join/Fundraise Since the Walk is now virtual, registration is optional. You can turn your registration fee into a donation, join/create a team or become a fundraiser. Team Set Up Once you create a team, you'll get an email for page set up. We also have step-by-step instructions here to personalize your page. Sponsor Info Your company sponsorship heightens the visibility of your commitment to social responsibility. The return on investment benefits us all. Vendor/Exhibitor This year we're offering two vendor experiences: Both provide virtual promotion, one also offers limited sponsor benefits. Legacy Warriors Are you a sickle cell warrior who's 40 or older? We invite you to join our Legacy Salute! Sign up here by 9/5 to be included. Our 2020 Sickle Cell Matters Virtual Walk Sponsors Diamond Presenting Silver Copper Pfizer Donating to SCDAA-MI benefits the thousands of individuals who depend on our education, advocacy and awareness efforts. It also benefits your corporate responsibility goals. Honorary Chair: Deborah Smith Pollard Co-host of "Sunday Morning Inspiration" on MIX 92.3 FM and Professor of English Literature at the University of Michigan-Dearborn. Honorary Co-Chair: Dr. Ahmar Zaidi Pediatric Oncologist/ Hematologist, Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan, and known to many as "Dr. Z". 2020 Sickle Cell Matters Walk sponsorships help provide educational and career resources to students and adults, ensure quality counseling services for navigating life with this chronic condition, offer a bridge to primary and specialty care for underserved individuals, support low-income clients in need of emergency financial assistance to meet basic needs, and more. Many of our sponsorships provide year-round engagement opportunities for companies and employees. to download the sponsorship packet. Click here We're also looking for community partners to serve on our Sickle Cell Matters Walk Host Committee. to download the interest form. Click here For more information, contact , Director of Operations & Outreach at 313-864-4406. Stefanie Worth

  • Sponsors | -scdaami-

    Thank You Sponsors

  • Treatments | -scdaami-

    sickle cell treatments While there is no universal cure for sickle cell disease (yet), there are several therapeutic approaches to relieve symptoms, reduce complications, and extend life. Early treatment (by eight weeks) by a hematologist is critical for newborns. Beginning a course of prophylactic penicillin at age two months was a historic intervention in changing the course of childhood sickle cell survival. View our Feb. 29th Treatment Workshop where we discussed all the current treatments available to cure sickle cell. CLICK TO PLAY ON FACEBOOK Part 1 with Dr. Wanda Whitten-Shurney (44 mins) CLICK TO PLAY ON FACEBOOK Part 2 with Dr. Ahmar Zaidi (58 mins) The only cure for sickle cell disease is a bone marrow or stem cell transplant. Most sickle cell disease transplants are currently performed in children who have had complications such as strokes, acute chest crises, and recurring pain crises. These transplants usually use a matched donor. Blood and bone marrow transplants are riskier in adults. Read more ​ Medicines can reduce or alleviate symptoms and complications and prolong life. Penicillin In children who have sickle cell disease, taking penicillin two times a day has been shown to reduce the chance of having a severe infection caused by the pneumococcus bacteria. Newborns need to take liquid penicillin. Older children can take tablets. ​ Many doctors will stop prescribing penicillin after a child has reached the age of 5. Some prefer to continue this antibiotic throughout life, particularly if a person has hemoglobin SS or hemoglobin Sβ0 thalassemia, since people who have sickle cell disease are still at risk. All people who have had surgical removal of the spleen, called a splenectomy, or a past infection with pneumococcus should keep taking penicillin throughout life. Hydroxyurea Hydroxyurea is an oral medicine that has been shown to reduce or prevent several sickle cell disease complications. This medicine was studied in patients who have sickle cell disease, because it was known to increase the amount of fetal hemoglobin (hemoglobin F) in the blood. Increased hemoglobin F provides some protection against the effects of hemoglobin S. ​ Watch Dr. Shurney’s animated video about Hydroxyurea and how it works Endari Approved by the FDA for sickle cell use in 2017, Endari is an oral L-glutamine therapy for sickle cell disease and sickle cell thalassemia that reduces the acute complications of sickle cell disease in adults and children 5 years and older. It works by increasing the amount of glutamine in the blood. The added glutamine is taken up by the defective sickle cells, and when metabolized (broken down) results in the release of antioxidants.Common side effects include constipation, nausea, headache, abdominal pain, cough, pain in the extremities, back pain and chest pain. Patient web site Endari co-pay assistance Adakveo In 2019, the FDA also approved a new medicine to reduce the number of pain crises experienced by adults and children 16 years and older who have sickle cell disease. The medicine, which is given through an IV in the vein, helps prevent blood cells from sticking to blood vessel walls and causing blood flow blockage, inflammation, and pain crises. Possible side effects include nausea, joint pain, back pain, and fever. Patient resources web site Downloadable patient brochure ​ Oxbryta The U.S. Food and Drug Administration (FDA) approved a new medicine in 2019 to treat sickle cell disease in adults and children 12 years and older. The oral medicine prevents red blood cells from forming the sickle shape and binding together. This may decrease the destruction of some red blood cells, which in turn lowers the risk for anemia and improves blood flow to your organs. Possible side effects include headache, diarrhea, abdominal pain, nausea, fatigue, and fever. Rarely, allergic reactions may occur, causing rashes, hives, or mild shortness of breath. Talk to your doctor about other medicines you take. Patient web site Caregiver tips Downloadable patient information leaflet Transfusions are often used in acute or preventive situations. Transfusions are administered to treat and prevent certain sickle cell disease complications. These transfusions may include: Acute transfusion to treat complications that cause severe anemia. Doctors may also use transfusions when a patient has an acute stroke, in many cases of acute chest crises, and in multi-organ failure. A patient who has sickle cell disease usually receives blood transfusions before surgery, to prevent complications. Red blood cell transfusions to increase the number of red blood cells and provide normal red blood cells that are more flexible than red blood cells with sickle hemoglobin. Regular or ongoing blood transfusions for people who have had an acute stroke, to reduce the chances of having another stroke. Doctors also recommend blood transfusions for children who have abnormal transcranial Doppler (TCD) ultrasound results, because transfusions can reduce the chance of having a first stroke. ​ There are other treatments for specific complications. Be mindful that not all treatments work for everyone. Some people find success with alternative treatments as well, including medical marijuana (be knowledgeable about that may impact school, work and overall health). To stay as healthy as possible, patients should be sure to get regular medical care that includes a pediatrician (for children) or primary care physician (for adults) a hematologist and work with them to create the best individual care plan. Patients should also live a healthy lifestyle and avoid triggers that may cause a pain crisis. legalities and ​ ​ Page sources: NIH: National Heart, Lung, and Blood Institute, FDA.gov, Endari, Adakveo, Oxbryta ​

  • Vendor Payment Confirmation | -scdaami-

    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. ​ , Director of Client Services at SCDAA-MI, coordinates vendor and exhibitor activities for the Walk and will contact you with further instructions and information. Tracie Conic You will receive an electronic payment receipt from PayPal. Please save your receipts. Thank you for your support!

  • Events | -scdaami-

    2019 holidays Camp Cancellation2 WSU 02282020 Whitten-Shurney MD Register2 GivingTuesdayNow Walk promo IMG_0946 SCDAAMI Stabenow meeting Ahmar TEDx IMG_0943 iseeu 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 Download the full calendar of events . here Events subject to change. A weekend of awareness and action for 2020 World Sickle Cell Day FRIDAY, JUNE 19: #MaskUp4SickleCell for World Sickle Cell Day Grab a red mask and get ready to #MaskUp4SickleCell on World Sickle Cell Day. This is a day to create awareness and inspire action among individuals with sickle cell and the allies in our community. On Friday, June 19, put on your red mask (whatever red cloth you have handy to use), and head over to Facebook to post a selfie. Have fun and edit your photo with a note about what your mask represents for your life with sickle cell and then write a post about what's #BehindTheMask . Invite your friends and family to join in supporting the cause by posting themselves in red masks, too. We'll have a special frame you can use on Facebook. You can also take a screenshot of that photo to post on Instagram, Twitter and SnapChat. Be sure to tag @sicklecellmichigan so we can share your post. Watch our next week for the latest updates and how to join the full campaign. You can also to download a step-by-step guide on how to participate. social media pages click here SATURDAY, JUNE 20TH: Virtual Graduation Open House Congratulations Class of 2020! We're recognizing our graduating sickle cell Warriors with a Virtual Open House on Saturday, June 20 as part of our World Sickle Cell Day weekend. Do you know someone who should be included? To be eligible, the student must have sickle cell, live in Michigan and be a December 2019 or Spring/Summer 2020 graduate from high school, college or trade school. Children of individuals with sickle cell who are graduating within these time frames are also eligible. The graduate will need to complete an information form and send us photos no later than midnight, Sunday, May 31. For all the details, please visit our page. Spread the word! Class of 2020 SUNDAY, JUNE 21: Sickle Sabbath We invite you to mark our first Sickle Sabbath in your place of worship on Saturday, June 20, or Sunday June 21 (depending on when you observe your sabbath). While sickle cell disease predominately affects people of African, Latino and Middle Eastern descent, it can affect anyone of any ethnicity or nationality. All faiths and denominations are encouraged to join us in educating their congregations about sickle cell disease and the importance of knowing your sickle cell trait status. Sickle Sabbath flyers, fact sheets and a social media graphic are available on our web site at . Participation is free, however, love offerings that day are welcome to support our education, outreach and advocacy services. www.scdaami.org/sicklesabbath To join the event, talk with your worship leader or health ministry and share the Sickle Sabbath materials for distribution to your congregation members. We also encourage you to post and share the information on social media pages. For additional information, please or call 313.864.4406. email us Have questions? Need info? Want to send an idea for an educational topic? Contact us at or 313.864.4406. info@scdaami.org

  • Community Resources | -scdaami-

    community resources Connect to services that can help meet your basic and emergency needs Out-state resources coming soon!​ for an additional list of COVID-19 specific resources. Click here Suicide Prevention Mental Health Clothing Internet & Device Access Housing/Shelter Food All Services ALL SERVICES Locate various community resources by zip code https://navigator.familydoctor.org/ ​ ​ 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 that can help with food, housing, utilities, medical bills, and more. You can get information online at , or by dialing 2-1-1 (or ). United Way 2-1-1 1-800-552-1183 ​ FOOD ​ Locate food banks by zip code https://www.feedingamerica.org/find-your-local-foodbank Detroit-area food banks and kitchens 2131 Beaufait St., Detroit, MI 48207, (866) 453-2637 Gleaners Food Bank of Southeastern Michigan - lways check location sites and bring a picture ID Forgotten Harvest - A Yad Ezra Lighthouse Food Pantry City of Detroit Food Pickup - Capuchin Soup Kitchen (313) 579-2700 Redford Interfaith Relief - ( 313) 387.9802 - CARES in Farmington Hills (248) 474-8231 (Call to make an appointment for the food pantry.) ​ HOUSING/SHELTER Wayne County (housing, food, basic necessities such as showers, laundry, etc) Covenant House (Housing, Food assistance) ​ Detroit Phoenix Center Wayne Metro Community Action Agency Detroit Housing Commission ​Detroit Housing (branches listed by zip code) Wayne County Department of Health and Human Services ​Wayne , ( United Community Housing Coalition 313) 963-3310 1726 Howard St., Detroit, MI 48216, Health Emergency Lifeline Program, (313) 832-3300 Oakland County , 1228 S. Washington, Royal Oak, MI 48067, ( The Sanctuary – Common Ground 248) 547-2260 ​ ​ 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 to enroll. Spectrum Wi-Fi hotspots are also currently open and free to use. 1-844-488-8395 : 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 if you live in an area with Optimum internet service, or call if you live in an area with Suddenlink internet service. 1-866-200-9522 1-888-633-0030 : AT&T https://www.att.com/help/covid-19/ CLOTHING ​ ● , Detroit: ( Salvation Army 313) 897-2914 ● - ( ● - ( ● - ( ● - ( Detroit Rescue Mission Ministries 313) 366-3409 Christ Church of Redford 313) 534-3436 Redford Interfaith Relief 313) 387-9802 CARES in Farmington Hills 248) 882-7800 ​ ​ ​ MENTAL HEALTH ​ Michigan Mental Health Networker National Alliance on Mental Illness (NAMI) ​ ​ ​ SUICIDE PREVENTION - (English) National Suicide Prevention Lifeline 1 (800) SUICIDE (Spanish) 1 (877) SUICIDA ​ ​ Back to the top Back to the top Back to the top SCDAA-MI’s services are available throughout Michigan and span lifetime needs. ​ For more information: Call 313-864-4406 Email info@scdaami.org Contact our nearest satellite office: 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) 372-025 ​

Sickle Cell Disease Association of America -
Michigan Chapter, Inc.

18516 James Couzens Fwy, Detroit, MI 48235

(313) 864-4406 OR (800) 842-0973

info@scdaami.org

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Originators of the SAFER Initiative (c) 2020

© 2020 Sickle Cell Disease Association of America - Michigan Chapter, Inc. All rights reserved.

SCDAA-MI is a qualified 501(c)(3) tax-exempt organization. Tax ID Number: 38-1963640.