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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.

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!

Sickle Cell Disease Association of America - Michigan Chapter Board of Directors Chairperson Kym L. Worthy Prosecutor, Wayne County District Jeffrey Sherbow, Esq, 1st Vice Chair, Attorney, Sherbow Law Office Ms. Cheryl L. Haskett, Treasurer Finance Director & Consultant, YDB, Inc. Kathleen Neumann, Secretary Retired Regional Director, Judson Center Sharada Sarnaik, M.D. , Assistant Secretary Retired Director, Comprehensive Sickle Cell Clinic Children's Hospital of Michigan Sonja L. Banks, CEO, International Dyslexia Association, Inc . 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

All About Maxine In the photo, standing left to right, Mrs. Marilyn Gripper, Treasurer CCC; Mrs. Shirley Dixon, Chairwoman CCC; Dr. Wanda Shurney, CEO and Medical Director SCDAAMI; Seated- Mrs. Maxine McBride. Photo was taken January 2023. W e honor Mrs. Maxine McBride for her community service and long-standing commitment to fighting sickle cell disease. In remembrance of a church member who perished from complications of sickle cell disease, Mrs. McBride is a founding member of the Cynthia Coles Circle (CCC) at Friendship Baptist Church in Detroit, and it was established in 1976. The Circle’s mission is to raise awareness about sickle cell disease, the need to improve care, and find a cure. For more than 30 years, Mrs. McBride has also served as a member of the Board of Directors for the Sickle Cell Disease Association Of America Michigan Chapter (SCDAAMI) further helping to raise funds, and elevate our mission. Mrs. McBride’s portrait will be proudly displayed at the Sickle Cell Disease Association of America Michigan Chapter office as a tribute to her dedication and faithful servic e. For more information about the Cynthia Coles Circle click here. CCC INFO Mrs. Maxine McBride

photo galleries 2019 event gallery 2018 Photo Gallery 2020 Photo Gallery Awareness Campaign Launch Celebrating 43 Years of Helping to Break the Sickle Cycle! The Cynthia Coles Circle 2019 Annual Sickle Cell Benefit Luncheon Saturday, May 18,2019 Guest Speaker Lt. Governor Garlin Gilchrist III Celebrating World Sickle Cell Day June 19, 2019 Thank you to all of our supporters! The Sickle Strong Empowerment Circle presents its 1st Annual Balloon Release June 19, 2019 World Sickle Cell Day Belle Isle Park Detroit, Michigan

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 Data Manager Khaleeda Robinson, MPH., B.S. Community Health Worker/Patient Advocate Detroit Michael Copeland, B.S. Community Health Worker/Patient Advocate Grand Rapids/Muskegon Area Jessica Williams Program Assistant Vacant Community Health Worker/Patient Advocate Saginaw/Flint Area Melanie Greer, B.S. Community Health Worker/Patient Advocate Benton Harbor/Kalamazoo Craig Bradley Director of Operations & Outreach Darlene Hunt Maintenance/Courier Kristal Johnson-Cobb Administrative Assistant Cree King-Jackson Executive Assistant/Newborn Screening Assistant Clifton Kirkman II Social Media Specialist Jerica McBride, M.A. Education/Career Coordinator Angela McCreary, B.S.W. Community Health Worker/Patient Advocate Lansing/Jackson Area Richard Reed Finance Manager Wanda Whitten-Shurney, M.D. CEO & Medical Director our staff

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 legalities 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) and 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. Page sources: NIH: National Heart, Lung, and Blood Institute, FDA.gov, Endari, Adakveo, Oxbryta

symptoms& complications Info You Should Know: Symptoms and Complications of Sickle Cell Disease (Although the language here is directed to parents, this list applies to both children and adults with sickle cell. When in doubt, please contact your medical provider or go to the hospital.) NIH NHLBI g uidelines for treating complications Anemia Your baby may have this condition if he/she lacks the number of healthy blood cells required to carry sufficient oxygen to the rest of the body. Some of the most common symptoms include paleness, low energy, breathing problems, and slower growth. Treatment: The doctor will consider the severity of the symptoms to suggest a treatment plan, but they may rely on antibiotics and blood transfusion to treat the condition. Acute Chest Syndrome It could be an extremely painful and serious situation because it restricts blood flow to the lungs. Some common signs and symptoms include chest pain, breathing problems, and fever. Treatment: The doctor may recommend treatment with blood transfusions, antibiotic medicine, pain medicine, and oxygen to help improve breathing. Pain Pain is common and happens when sickled cells restrict blood flow. Pain can be anywhere in the body – it can be in organs and joints as well. The pain may continue for a few hours or extend to days and even weeks. It is important to give your child plenty of fluids, maintain temperature, and keep them from high altitudes to limit pain episodes. Treatment: Some of the most common treatment options include heating pads, prescription pain medicine, OTC pain relievers like ibuprofen, and hydroxyurea to help produce a specific type of hemoglobin. Extended pain requires hospitalization and narcotic medications. Hand-Foot Syndrome A child may experience pain, coldness, or swelling in the feet and hands when the sickle cells affect the blood supply to these limbs. Treatment: The doctor may rely on certain pain-relieving medicine to treat the symptoms. Giving your child plenty of fluids may also help. Splenic Crisis Sometimes, sickled cells accumulate in the spleen and clog it. This leads to swelling that prevents the spleen from filtering blood in the body. Specific signs include weakness, pain on the left side of the belly, and a rapid heart rate. Treatment: The usual treatment option is blood transfusion. The doctor may also consider removing the spleen iif splenic crisis becomes a regular issue. Infection Your child may have to fight with several infections including the infection of the lining of the brain and lung infection. Signs and symptoms include breathing problems, fever, coughing, headaches, and pain in the bones. An oral temperature over 100.3 requires a trip to the emergency room to help prevent bacterial sepsis. Treatment: It is important to prevent an infection from happening by staying up to date on vaccinations. If your child gets an infection, your doctor may recommend some antibiotics to clear the infection. Taking antibiotics regularly may help prevent infections when your baby is between 2 months and 5 years of age. Stroke Those altered red blood cells may restrict blood flow to the brain, which sometimes leads to a stroke. The most common symptoms include weakness on one side of the body, severe headache, and changes in speech, alertness, hearing, or vision. Treatment: Your child's healthcare provider will first notice these symptoms and then ask for an ultrasound, called Doppler ultrasound, to determine your child's risk for stroke. Vision Loss Blindness and other vision problems may happen when these cells block blood supply to your child's eyes. Sometimes, the cells block the blood flow to a specific part of the brain that leads to vision loss. Treatment: A regular eye exam with an ophthalmologist is necessary to avoid such issues, but your doctor may also recommend additional eye treatment to prevent further damage. More on major complications and their treatments from the CDC

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 48 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. 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.

External jobs/ careers Dedicated Career Opportunities The Sickle Cell Disease Association of America – Michigan Chapter (SCDAA-MI), offers external job postings that attract a diverse pool of qualified candidates, helping them find the right talent to drive growth and success in a environment that is suitable to their educational and experienced background. Please see below of a list of job positions that are available in other companies seeking individuals who qualify. Since we are a community based organization, are goal is to improve the well-being of the community it serves, whether that's through economic growth, educational opportunities, job opportunities, healthcare access, or social services Position Available: Bronson Careers The Sickle Cell Disease Association of America - Michigan Chapter and our affiliates are an Equal Opportunity Employer

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