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- 2019 Sickle Cell Matters Annual Walk | -scdaami-
2019 Sickle Cell Matters Walk Become a Sponsor Become a Vendor
- Ways 2Give | -scdaami-
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?
- Advocacy and Legislation | -scdaami-
Your voice matters in the election process. The representatives we choose make decisions that affect access to healthcare, regional transportation, insurance laws, disability protections, prescription pricing and more. Join us as we speak out on behalf of individuals living with sickle cell and the legislation that affects them. ADVOCACY TRAINING Would you like to be able to join us on an advocacy meeting to speak with a legislator? Below, you can watch a training webinar presented to our sickle cell advocates by the Every Life Foundation for Rare Diseases. (90 minutes, mp4 webinar) OUR ADVOCACY PARTNERS Sickle Cell Disease Association of America Rare Disease Legislative Advocates Every Day Life Foundation Health Can’t Wait Coalition American Society of Hematology ARE YOU READY TO VOTE? November Presidential Election - Tuesday, Nov. 3 The deadline to register to vote in this year’s November presidential election is Oct. 23 for any form but in-person. Last day for in-person registration is election day, Nov. 3. To be eligible to vote in Michigan, you must be: A Michigan resident (at the time you register) and a resident of your city or township for at least 30 days (when you vote) A United States citizen At least 18 years of age (when you vote) Not currently serving a sentence in jail or prison Learn more about voting in Michigan . here Check your voter registration status here . Register online . here Absentee voting “Due to the constitutional amendment passed by voters in 2018, all eligible and registered voters in Michigan may request an absent voter ballot without providing a reason. They can visit their local clerk’s office for an absent voter ballot application or download one at ” Michigan.gov/Vote Michigan ballot drop locations You can take your absentee ballot to the drop box in your jurisdiction and through the election process. track your ballot advocacy & legislation Current issues we’re working on include: The American Society of Hematology wants to ensure the needs of individuals living with sickle cell are addressed through Medicaid in COVID-19 stimulus legislation. . Learn more SB612 (Michigan) - A bill to change legislation around insurance preauthorization and step requirements. and . (Complete the action form to create a pre-written email that will be sent directly to your senator.) Learn more take action New Medicaid work requirements Securing coverage for new sickle cell treatments (We'll keep you posted!) Other recent issues “The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018” (federal) – Passed in December 2018 Michigan's medical marijuana law - View a , what conditions are covered by the bill, and its restrictions summary of the bill Have you completed your 2020 Census? Data gathered from the 2020 Census will help inform funding decisions for school lunches, infrastructure, first responders and more. Your answers are confidential and there are no citizenship questions. Take 10 minutes to answer the census today DO YOU KNOW WHO REPRESENTS YOU? You can and enter your address to find your local, state and federal elected officials along with their names and contact information. click here to see Michigan's legislative districts Use the map . World Sickle Cell Disease Awareness Day in Michigan - June 19, 2020 2020 World Sickle Cell Day received legislative support this year as Rep. Ronnie Peterson introduced House Resolution #280 declaring June 19, 2020 as World Sickle Cell Awareness Day in Michigan. Rep. Peterson also introduced a bill to create a sickle cell license plate for Michigan. The bill received outstanding bi-partisan support. We are deeply grateful for these actions from our elected officials and the members of the Michigan Legislative Black Caucus who were able to join us at the capital. #BlackPatientLivesMatter
- Press Releases | -scdaami-
News media releases and alerts from SCDAA-MI press releases 2019-20 Press Releases September 17, 2020: MEDIA ALERT: SCDAA-MI marks Sickle Cell Awareness Month with walk, ER call-to-action SCDAA-MI “Shines the Light” for World Sickle Cell Day, June 19 June 12, 2020: February 26, 2020: SCDAA-MI Announces SAFE(R) Initiative to Improve Emergency Sickle Cell Care Dr. Wanda Shurney Responds to FDA's Approval of Adakveo November 20, 2019: FOR IMMEDIATE RELEASE September 17, 2020 ***MEDIA ALERT*** SCDAA-MI marks Sickle Cell Awareness Month with walk, ER call-to-action Virtual walk participants encouraged to “move how you choose” on Sept. 19 Physician, hospital partners urged to take a stand for SAFER sickle cell care The annual Sickle Cell Matters Walk raises consciousness around the most common genetic disorder in the U.S., but this year it happens from wherever participants are. More than just an awareness event, SCDAA-MI’s walk raises funds, promotes the need for additional sickle cell research, and combats medical inequities often faced by sickle cell patients. #SickleCellMatters #SickleCellMattersWalkMI #SickleCellLivesMatter WHAT: SCDAA-MI CEO & Medical Director, Wanda Whitten-Shurney, M.D.; 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, Ahmar Zaidi, M.D., a Pediatric Oncologist/Hematologist, in the Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan, and nationally known SCD advocate known to most as “Dr. Z.” Event sponsors: (Diamond Presenting) Global Blood Therapeutics and Emmaus Life Sciences; (Silver) Novartis, Medunik USA, and Wayne County Community College District; (Copper) Pfizer and Functional Fluidics. WHO: Though medically recognized more than 100 years ago, it was only the introduction of prophylactic penicillin in the 70s and subsequent comprehensive pediatric efforts that now allow most individuals with sickle cell to live far beyond childhood and well into adulthood. However, there are just four disease-modifying treatments available to sickle cell patients, with two of those achieving FDA approval less than a year ago. Most patients, then, resort to emergency department care for sickle cell’s unpredictable, indescribable pain crises. Once there, only about one in four patients receives 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, according to the U.S. Health and Human Services Office of Minority Health. WHY: Saturday, Sept. 19 WHEN: The virtual Sickle Cell Matters online program premiers at 10 a.m. EST on SCDAA-MI’s YouTube channel ( ) and Facebook Live @SickleCellMichigan. Interested hospital and physician partners can learn more and partner with SAFER at WHERE: https://www.youtube.com/channel/UChFCW2PqipdZiRKcb16Z5Gw www.scdaami.org/sicklecell911. Stefanie Worth | email: MEDIA CONTACT: email@example.com ABOUT SCDAA-MI: 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. Founded in 1971 by Charles F. Whitten, M.D., the Sickle Cell Disease Association of America – Michigan Chapter, provides education, assistance, and advocacy for individuals living with and families affected by sickle cell disease. Other services include counseling, support groups, referrals for financial assistance and medical care. SCDAA-MI connects students and job seekers with school, college and employment assistance; sends children to summer camp each year, and works to raise public awareness. The agency also serves as the coordinating center for the newborn sickle cell screening program for the Michigan Department of Health and Human Services. SCDAA-MI’s services are available throughout Michigan and span lifetime needs. For more information, visit or call 313-864-4406. Our Mission: www.scdaami.org ### BACK TO THE TOP SCDAA-MI “Shines the Light” for World Sickle Cell Day, June 19 Supporters are asked to #MaskUp4SickleCell, celebrate community grads, and recognize #SickleSabbath JUNE 12, 2020 PRESS RELEASE PDF CONTACT : Stefanie Worth “It’s a blood disease, not a black disease,” says Dr. Wanda Whitten-Shurney, citing one of the takeaways her agency and other community-based sickle cell organizations want people to learn through this year’s World Sickle Cell Day events. Sickle cell is genetic – not contagious – and most common among people of African descent and those of Latin American and Middle Eastern heritage, but can affect anyone of any race. Sickle Cell Disease is the most prevalent inheritable blood disorder in the country, affecting 70,000 – 100,000 individuals, most of whom are African American. “We have an entire weekend of activities that include generating awareness, honoring our graduates, and learning during worship,” says Shurney, CEO and Medical Director of the Sickle Cell Disease Association of America – Michigan Chapter Inc. “We’re sending our message out into the world to create change on behalf of a group of individuals who were born with a disease that is almost always automatically discriminated against.” Efforts for World Sickle Cell Day, Friday, June 19, aim to enlighten the community-at-large. A social media blitz featuring the hashtags #MaskUpForSickleCell and #BehindTheMask will feature photos of patients, caregivers and allies in red masks telling their stories and sharing key messages: Sickle cell disease affects individuals of all races. It’s a BLOOD disease, not a Black disease. It is in your genes. It is NOT contagious. Individuals with sickle cell disease are not drug addicts, they need pain relief. If both parents have sickle cell trait they can have a child with sickle cell disease. GET TESTED to know for sure. Though medically recognized more than 100 years ago, it was only the introduction of prophylactic penicillin in the 70s and subsequent comprehensive pediatric efforts that now allow most individuals with sickle cell to live far beyond childhood and well into adulthood. T o help celebrate their milestones, World Sickle Cell Day continues on Saturday, June 20 with a Virtual Graduation Open House for students finishing high school, trade school or college. This outreach effort focuses on educating people about sickle cell trait, which is carried by approximately 1 in 12 African Americans. SCT is also found among people with ancestry from sub-Saharan Africa; the Western Hemisphere (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy according to the Centers for Disease Control. “Sickle cell disease starts with sickle cell trait” is the message churches are asked to carry to their congregations along with information about chances of inheritance and challenges of the disease. On Sunday, June 21, World Sickle Cell Day attention turns to houses of worship varying in size, denomination and membership composition for Sickle Sabbath. “This is an impactful time in America and we hope that World Sickle Cell Day can build on the Black Lives Matter movement to create real change in medical settings for people with sickle cell. I’m calling on my colleagues who knelt in solidarity with White Coats For Black Lives to create a movement that makes the emergency rooms and hospitals safe spaces for sickle cell patients,” says Shurney. “The hallmark of sickle cell is excruciating, unpredictable pain that often drives patients to seek care in emergency departments,” Shurney continues. “These are individuals who’ve often lived with pain since childhood and – being good patients – know their bodies and what they need to control their pain, which is typically opioids. Yet they arrive at hospitals seeking relief and are often accused of being there just to get drugs. You would think they’d be treated like a Type 1 diabetic who shows up needing care and knows their proper insulin dosage, but they’re not.” In February, SCDAA-MI launched its SAFE(R) initiative to help counter this reality. SAFE(R) provides medical professionals with quick access to an online portal at SCDAAMI.org/SickleCell911 that provides clinical practice guidelines for sickle cell established by the National Institutes of Health, sickle cell-specific opioid guidance from the CDC, and emergency room triage guidelines from the Agency for Healthcare Research and Quality, as well as best practices and recommendations from the American Society for Hematology and other leading experts in sickle cell treatment. Only about one in four patients with sickle cell disease receives 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, according to the U.S. Health and Human Services Office of Minority Health. “The world is at a crossroads and so is sickle cell disease. Two new medications were approved by the FDA for treatment at the end of 2019. Yet, patients still face barriers accessing these meds and receiving competent, compassionate medical care,” says Shurney. “Too many providers still don’t know how to properly treat sickle cell patients. Stereotypical biases prevent many individuals from receiving care according to nationally established guidelines – or any care at all. “We have a long way to go to reach health equity where sickle cell is concerned. Now is a great time to start.” BACK TO THE TOP SCDAA-MI ANNOUNCES SAFE(R) INITIATIVE TO IMPROVE EMERGENCY SICKLE CELL CARE Effort aims to assist medical community in proper treatment of long-misunderstood disease February 26, 2020 PRESS RELEASE PDF CONTACT : Stefanie Worth Today, the Sickle Cell Disease Association of America - Michigan Chapter launched a new initiative designed to help advance the care and well-being of individuals living with sickle cell disease. The initiative, known as , provides medical professionals with quick access to an online portal at that provides clinical practice guidelines for sickle cell established by the National Institutes of Health, sickle cell-specific opioid guidance from the Centers for Disease Control, as well as best practices and recommendations from the American Society of Hematology and other leading experts in sickle cell treatment. SAFE(R) SCDAAMI.org/SickleCell911 Though medically recognized more than 100 years ago, it was only the introduction of prophylactic penicillin in the 80s and subsequent comprehensive pediatric efforts that now allow most individuals with sickle cell to live far beyond childhood, although their lifespan still falls short of the national average by about 30 years. Yet, while research and treatments for the disease are now gaining more attention, individual’s lives are at stake daily due to a lack of adult medical providers trained in sickle cell’s complexities. In fact, there is a peak in mortality at the time of transition from pediatric to adult care. “For more than 30 years, I’ve had the privilege of serving as pediatrician to Michigan children with sickle cell disease – caring for them and their families, and advocating for their needs. Along with my colleagues across the country, we’ve achieved levels of success in their healthcare that my father only dreamed of when he started SCDAA-MI 49 years ago,” says Dr. Wanda Whitten-Shurney, CEO and Medical Director. “Now we’ve reached this pivotal point in sickle cell history where research and treatment possibilities are at an all-time high, yet, we are losing far too many patients we’ve brought all this way for the past four decades to a medical system unprepared to receive them.” The emergency room – a frequent stop for our patients – is an extremely perilous place for adults. Individuals out-of-state have often reached out to their former pediatricians at the Children’s Hospital of Michigan Sickle Cell Clinic asking them to coach a doctor in charge of their care unfamiliar with the disease. The situation has produced a skepticism among patients that they’ll be adequately cared for, sometimes causing them to take their chances and not go to the ED at all. Central, then, to the SAFE(R) Initiative is the wallet-sized Sickle Cell 911 (SCD911) card, which directs providers to the SAFE(R) site at . In addition to guidelines, recommendations and best practices, the medical professional-focused pages also provide educational resources about the disease and its potential complications. SCDAAMI.org/SickleCell911 Sickle cell patients are advised to carry the SCD911 card with them and present it when they need emergency care – whether at home or away. Patients and caregivers have shared stories about ED providers resorting to the internet or medical journals to find information about treating the disease. The SAFE(R) initiative puts that information at providers’ fingertips in an easily accessible and usable format, hopefully saving crucial acute care time that in turn leads to saving lives. “I’m appealing – no, challenging – my counterparts in adult primary, specialty, and emergency medicine to partner with us in changing this narrative by committing to SAFE(R) treatment. It’s time for a plot twist, so to speak, and we invite you to help re-write the future chapters of the sickle cell story. Patients throughout Michigan are looking for SAFE(R) spaces for care every day. Let us know we can confidently refer them to you and your health systems for this compassionate, equitable, and guideline-based treatment. History will thank you and so will we.” BACK TO THE TOP Dr. Wanda Shurney Responds to FDA's Approval of Adakveo First targeted treatment sparks excitement and hope among doctors and those living with the debilitating condition November 20, 2019 PRESS RELEASE PDF CONTACT : Stefanie Worth Friday, , the first targeted therapy to treat pain in patients with sickle cell disease (SCD). “This medication is a potential game changer in the quest for better treatment for patients with sickle cell disease (SCD),” said Wanda Whitten-Shurney, M.D., CEO and Medical Director of the Sickle Cell Disease Association of America - Michigan Chapter (SCDAAMI). “We are excited that after 109 years, individuals with SCD can finally say there is a medication developed specifically for them. For 20 years our patients had only one disease modifying medication, hydroxyurea. the FDA gave its approval for Adakveo (crizanlizumab-tmca) “Unfortunately, because it is a drug used to treat cancer, many physicians are hesitant to prescribe it and many patients are afraid to take it – leaving supportive care such as blood transfusions, antibiotics for infections, and potent narcotics for essential pain relief as their only options,” said Dr. Shurney. First recognized by the medical community in the United States in 1910, SCD is a genetic condition inherited from two parents who carry the gene for sickle cell trait. The hallmark of the disease is episodes of unpredictable and often excruciating pain due to crescent- (sickle) shaped red blood cells that block the flow of blood, and therefore the delivery of oxygen, to vital organs. These red blood cells are also fragile and break down early causing anemia and fatigue. The newly-approved Adakveo targets the episodes of pain frequently referred to as a pain crisis. “We hear story after story from patients in genuine need of significant pain treatment being denied the compassionate and competent care they desperately need and deserve because many in the medical community are unsure, uncomfortable, or unaware of how to best treat sickle cell patients,” said Dr. Shurney. “Patients in crisis are often questioned about the validity of their symptoms and assumed to be ‘drug seeking’.” This problem is exacerbated by the current opioid crisis. In addition to her role at the SCDAAMI – fondly known as the Sickle Cell Center throughout the community – Dr. Shurney has been a familiar face to many families whose children have been patients at the Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan during her 30-year career providing out-patient care with an emphasis on education and coping strategies. She has worked relentlessly to help kids and their families manage the chronic ailment while enjoying healthier, more active lives. Many of her patients are now adults – something unheard of 30 or 40 years ago. “Thanks to advances like the administration of penicillin to give children with SCD a fighting chance against infection, we’re now seeing many patients living a closer to normal lifespan, but they are still faced with significant challenges,” said Dr. Shurney. “This illness can disrupt every aspect of the family’s life. Children miss school, parents and adults miss work which can result in termination of employment and the resultant financial strain on the family. Frequent trips to the doctor and repeated hospitalization are an additional burden. Many individuals have some level of pain every single day. After 109 years, it is past time to improve life and offer hope to this patient population.” Though numbers are thought to be higher, an estimated 100,000 individuals in the U.S. currently live with some form of the debilitating and life-threatening disease. Comparatively, there are about 30,000 people with cystic fibrosis and 20,000 people (predominantly men) with hemophilia.1 Yet, despite three to five times as many people living with SCD, the disease remains widely unknown, misunderstood, and poorly resourced. “This in the face of the fact that SCD primarily affects people of color - mostly African Americans and Latinos, but also East Indians, Greeks, Italians, individuals from the Middle East, and other people from malaria-afflicted parts of the world,” said Dr. Shurney. The disease is an evolutionary response to malaria: Those with sickle cell trait are less likely to get malaria. But nature’s protective mechanism brought about its own unbearable consequences. “Thanks to the Orphan Drug Act, there are numerous promising clinical trials underway. We are also encouraged by the National Institutes of Health’s Cure Sickle Cell Initiative striving for a genetic cure in the next five to 10 years,” said Dr. Shurney. “The FDA’s approval of Adakveo is a big step in the right direction. Our next challenge is to make sure the medication is accessible to the patients who so desperately need it. Individuals with sickle cell disease are living longer, but we are also focused on improving their quality of life.” 1 Cystic fibrosis and hemophilia statistics courtesy of the Centers for Disease Control at www.cdc.gov BACK TO THE TOP
- Client Feedback | -scdaami-
client feedback Volunteer Photo Release Client Feedback SCDAA-MI has been helping improve the lives of individuals with sickle cell for nearly half a century. How are we doing? We'd like to hear from you to help shape our work for the next 50 years. Use the form below to tell us how we've been able to help you, what we can do better, and to share your ideas for other services. Your voice matters! Thanks for sharing your feedback!
- Original Client Feedback | -scdaami-
client feedback Volunteer Photo Release Client Feedback Your voice matters! SCDAA-MI has been helping improve the lives of individuals with sickle cell for nearly half a century. How are we doing? We'd like to hear from you to help shape our work for the next 50 years. Use the form below to tell us how we've been able to help you, what we can do better, and to share your ideas for other services. Thanks for sharing your feedback!
- Summer Camp | -scdaami-
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. 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 2020 Fall Family Camp Schedule September 25-27 General Session/Dance Marathon at the University of Michigan Family Camp (for children with a physical or developmental delay) October 2-4 General Session/Sickle Cell Family Camp October 16-18 General Session/Transplant Family Camp October 23–25 General Session/Epilepsy Family Camp The hope is that a weekend of (virtual) Family Camp will give families just the right amount of camp community and mooseness to help build connections and create fun shared experiences together. Also, each family who registers before the proposed deadline will be receiving one of Moose’s famous camp-in-a-box Care Packages, which includes supplies for some creative activities, along with a special note from the mascot himself. Registration deadline for the full camp experience (including the Care Package) is September 11, 2020 for the first two sessions and October 2, 2020 for the last two sessions.
- Our Partners | -scdaami-
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!
- Our Services | -scdaami-
our services Top of Page Newborn Screening Testing & Genetic Counseling Case Management Career Development Community Education Newborn Screening As of July 1987, every baby born in the state of Michigan is tested for sickle cell conditions by the Michigan Department of Community Health. This identification allows infants to receive lifesaving penicillin prophylaxis before the disease might be diagnosed from the occurrence of sickle cell disease symptoms. Newborn screening also enables families to receive early disease education and be aware of critical signs and symptoms that may require medical/lifesaving intervention. When an infant is diagnosed with sickle cell trait, the agency provides information to the family about the significance of the condition and free testing for other family members if desired. Return to top of page SCDAA-MI also helps with: Obtaining the required confirmatory test Education and genetic counseling Penicillin management Access to appropriate medical care Testing & Genetic Counseling The function of the testing program is to determine whether a person is at risk for having a child with sickle cell disease. The non-directive counseling program provides detailed and accurate information about sickle cell trait and sickle cell disease for those identified as carriers. This will enable individuals and couples to make informed decisions that they believe are in their best interest regarding family planning. Return to top of page Walk-ins welcome M-F 9 a.m. - 5 p.m. We are open until 7 p.m. on Thursday evenings for appointments. Case Management Services One of the major functions of the social work program is to assure that clients have access to adequate medical care. Our focus is to provide comprehensive client centered services which lead to empowerment and self-sufficiency. Community Health Workers/Patient Advocates provide public education, social work services and care coordination services to children and adults with sickle cell disease throughout Michigan at Children’s Hospital of Michigan and other local health institutions covering Lansing, Pontiac, Jackson, Ann Arbor, Flint, Saginaw, Kalamazoo, Benton Harbor, Grand Rapids and Muskegon. Services also include trait follow-up and conducting an annual psychosocial assessment for families with appropriate follow-up. The services provided include: Client advocacy Individual and family counseling Disease education Medical referrals Trait follow up Annual psychosocial assessment and follow up Navigating insurance Assistance finding primary care and specialty physicians Assistance with basic needs Return to top of page For assistance with the above matters, please contact your nearest office below or email : firstname.lastname@example.org Metro Detroit (313) 864-4406 Jackson/Lansing Area: (517) 394-7397 Saginaw/Flint Area: (989) 755-7752 Benton Harbor/ Kalamazoo Area: (269) 927-5629 Grand Rapids/ Muskegon Area: (616) 243-1868 Career Development The Career Development Program assists individuals with a sickle cell disease ages 14 and above to plan and achieve a career goal leading to satisfactory employment. We offer clients a six-stage career development course to aid in gainful and satisfactory employment. Other services provided include: Vocational Counseling and Testing Information about Financial Aid College Planning Resume Preparation and Interviewing Skills Assistance with Summer Employment for ages 14-21 Job Replacement and Retention Assistance Summer Reading Enrichment Program for grades K-12 Referral Services Alternative work programs Disability and accommodations assistance for school (including college) and work Resources currently utilized are Michigan Department of Labor and Economic Growth Michigan Rehabilitation Service (MRS) and the Social Security Administration’s Work Incentive program. Return to top of page For career assistance, contact Jerica McBride at 313-864-4406, ext. 109, or email her at email@example.com. Community Education Our free 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. Children ages 8-17 are able to participate in activities including swimming, boating, horseback riding, crafts, archery and much more. summer camp The Public Education Program is designed to increase awareness and educate the general public. Our goal is to provide meaningful and accurate information regarding all sickle cell conditions. The following services are available: Group Presentations Media Presentations Health Fair Displays Printed Material Workshops and training sessions Return to top of page Keep up with our latest events . For additional information on services, email firstname.lastname@example.org or call 313-864-4406 and walk-ins are welcome for blood tests to diagnose sickle cell trait and disease as well as genetic counseling. SCDAA-MI’s services are available throughout Michigan and span lifetime needs. Appointments are available For more information: Call 313-864-4406 Email email@example.com Contact our nearest satellite office: Jackson/Lansing Area: (517) 394-7397 Saginaw/Flint Area: (989) 755-7752 Benton Harbor/Kalamazoo Area: (269) 927-5629 Grand Rapids/Muskegon Area: (616) 243-1868
- Sickle Cell Disease | -scdaami-
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 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 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 A History of Sickle Cell Download the PDF here Back to the top