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2020 Sickle Cell Matters Virtual Walk Sponsor & Vendor Gallery Terumo Vendors: Sick Cells and Versiti Blood Services Thank you to our 2020 Sickle Cell Matters Walk sponsors!

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.

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

2019 Photo Gallery 2018 Photo Gallery photo galleries Awareness Campaign Launch 2020 event gallery World Sickle Cell Day - Friday, June 19th We asked you to #MaskUp4SickleCell and you did that! From across the country and around the globe Warriors and supporters showed up to share their stories, raise awareness, and push for action. Thank you! (Is your photo missing from our collection? Email it to us!)

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!

contact us Volunteer Photo Release Client Feedback WE'RE NOW WORKING REMOTELY TO HELP PROTECT OUR COMMUNITY. PLEASE CALL FOR ASSISTANCE. THANK YOU! If you need assistance, have questions, or would like to partner in SCDAA-MI's work,our staff will be happy to help. Contact Us First Name Last Name Email Phone Type your message here... Thanks for reaching out! Submit Email: info@scdaami.org Detroit/SE Mich: 313-864-4406 or 800-842-0973 Children's Hospital SC Clinic: 313-745-5613 Sickle Cell Trait Counseling: 313-595-0541 School/Job Assistance: Our Address: 18516 James Couzens Fwy. Detroit, Michigan 48235 Hours of Operation: 9 a.m. - 5 p.m. Monday - Friday You can also contact our nearest satellite offices: Detroit Area (313) 613-7327 Benton Harbor/Kalamazoo Area: (304) 404-4229 Grand Rapids/Muskegon Area: (616) 788-9816 Jackson/Lansing Area: (517) 249-9528 Saginaw/Flint Area: (800) 842-0973 Photo release Photo/Video Release The Sickle Cell Disease Association of America - Michigan Chapter, Inc. frequently takes photos and video at its events and activities and ask that participants sign a waiver allowing the use of their likeness in publications, our web site, social media sites, and other public forms. You will only need to complete this form once. If at any time you wish to revoke use of your likeness in the future, you must do so in writing. Children under 18 require consent from a parent or guardian. Please contact us with questions. Thank you! Download release form here . Please complete and return to info@scdaami.org

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 .

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

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

our services Top of Page Newborn Screening Testing & Genetic Counseling Case Management Career Development Community Education Case Management Career Development Newborn Screening 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 Offices is closed to the public due to Covid. Remote Hours M-F 9 a.m. - 5 p.m. . 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 info@scdaami.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 mcbridej@scdaami.org . Community Education Our free 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. Children ages 8-17 are able to participate in activities including swimming, boating, horseback riding, crafts, archery and much more. 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 info@scdaami.org or call 313-864-4406 Testing & Genetic Counseling Community Education 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: Jackson/Lansing Area: (517) 394-7397 Saginaw/Flint Area: (800) 842-0973 Benton Harbor/Kalamazoo Area: (269) 927-5629 Grand Rapids/Muskegon Area: (616) 243-1868

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