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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.

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

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!

Donate and advocate for Sickle Cell Disease in one easy step by purchasing a Michigan Sickle Cell Awareness license plate. Part of the proceeds from every license plate sale and renewal goes directly to the Sickle Cell Disease Association of America-Michigan Chapter (SCDAA-MI) for ongoing support to sickle cell warriors and their families. And we’re proud to be only the fourth state in the nation with this fundraising option, continuing the legacy of leadership and innovation that was started by Dr. Charles F. Whitten. This is an easy and powerful way to support awareness, research and advocacy for Michiganders living with sickle cell. AWARENESS LICENSE PLATE How much do the license plates cost? Like other special cause fundraising license plates in Michigan, our Sickle Cell Awareness license plate will cost $35, with $25 of the purchase fee going to SCDAA-MI. Even when your Sickle Cell Awareness plate is renewed, $10 will be donated to SCDAA-MI to benefit sickle cell warriors. Can I personalize the Sickle Cell Awareness plate? Yes you can! Check the Michigan Secretary of State website for more information. Can I get a license plate that’s not for my car? Yes you can! You can order a Sickle Cell Awareness collectible license plate that’s for display only. SCDAA-MI will still get a $25 donation for each plate you purchase. And there’s no limit on the number you can buy! How do I get a Sickle Cell Awareness license plate? You can order a license plate for your car to replace your current plate by mail or online. You can order collectible plates for display by mail. Visit the Michigan Secretary of State website for more information. Please join in raising awareness and funding for sickle cell disease. Drive with a Purpose Today!

campaign awareness launch 2021 Photo Gallery 2020 Photo Gallery 2019 Photo Gallery 2018 Photo Gallery

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

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

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. Click here to download the sponsorship packet. We're also looking for community partners to serve on our Sickle Cell Matters Walk Host Committee. Click here to download the interest form. For more information, contact Stefanie Worth , Director of Operations & Outreach at 313-864-4406.

summer camp Our summer camp experience provides a unique opportunity for our children to gain self-confidence and independence. It also helps parents overcome issues of over protectiveness which may occur when raising a child with a chronic illness. Summer Camp North Star Reach Virtual Fall Family Camp North Star Reach is continuing to keep the health and safety of campers, families, staff and volunteers their top priority. Therefore, they are continuing with virtual Camp-at-Home programming this fall for family camps instead of on-site programming. Below is their fall camp schedule, and a brief online registration form is now live at the Camp-At-Home website .

sickle cell disease Living with sickle cell disease isn't easy, but proper knowledge about the condition will help patients live a longer, healthier life and guide trait carriers in making educated child-bearing decisions. Symptoms & Complications Sickle cell trait Top A history of sickle cell What Is Sickle Cell Disease? Sickle cell is an inherited blood disorder in which the red blood cells change their shape. It is a genetic abnormality and is caused by an abnormal type of hemoglobin, called hemoglobin S or sickle hemoglobin. Normal red blood cells have a disc-like shape, but in patients of sickle cell disease, they take on a crescent or sickle shape. Normal blood cells carry oxygen to the body, but altered cells cannot move easily through your blood vessels, which affects the oxygen supply. These altered cells cannot carry oxygen properly because when they release oxygen, it sticks together and changes the shape of the red blood cell. Prevalence of Sickle Cell Disease Sickle cell has existed for thousands of years and millions of people around the world suffer from the disease, but it's more common in people with an African bloodline. It is also quite common in people whose ancestors come from the Arabian Peninsula; Mediterranean countries such as Turkey, Greece, and Italy; Central America; Spanish-speaking regions in South America; and parts of the Caribbean. As a whole, it affects approximately 100,000 Americans and is the most common heritable blood disorder in the U.S. How Do You Inherit Sickle Cell Disease? Sickle cell disease is not contagious – you're born with it. A child may have this disease when he/she inherits one hemoglobin S gene from each parent. About 1 in every 365 African American babies are born with sickle cell each year and. While the disease primarily affects African Americans and people of color - including individuals of Hispanic and Middle Eastern descent, anyone can inherit sickle cell if the genetics are in place. There are also other sickle cell mutations, including Hemoglobin SC disease and hemoglobin Sβ thalassemia, the two most common. Sickle Cell Trait 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 with their health. Learn more about sickle cell trait sickle cell trait Artwork copyright Ebony.com . Explore More In-Depth Information American Society of Hematology ASH Centers for Disease Control CDC National Institutes of Health NIH Back to the top Sickle Cell Disease: Milestones in Research and Clinical Progress (REVISED September 2018) - download here History A History of Sickle Cell Download the PDF here Back to the top