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our services For more information: Detroit Main Line: (313) 864-4406 Children's Hospital SC Clinic: (313) 745-5613 Sickle Cell Trait Counseling: (313) 595-0280 School/Job Assistance: (313) 595-0541 Email info@scdaami.org ​ Contact our nearest satellite office: Adult Clinic Caseworker at DMC :(313) 864-4406 Benton Harbor/Kalamazoo Area: (313) 505-4081 Grand Rapids/Muskegon Area: (616) 788-9816 Jackson/Lansing Area: (800) 842-0973 Saginaw/Flint Area: (989) 372-0256 SCDAA-MI provides a range of services to individuals with sickle cell and their families. This includes counseling, support groups, referrals for financial and medical help, college and employment assistance, sending children to summer camp each year. The agency also coordinates newborn screening for all babies born in Michigan. Client assistance WHAT WE DO HERE TO HELP Services We Provide Do you have medical insurance, primary care, a hematologist? Do you need accommodations at school/work? Let us help you manage your life with sickle cell. Read More PARTNER RESOURCES Community Connections We've compiled a handy list of helpful partner resources you can use to help meet basic and emergency needs for yourself and/or your family. Read More COVID-19 INFORMATION What You Should Know Individuals with sickle cell run a higher risk of complications if they contract COVID-19. Get SCD-specific info and guidelines to help stay safe. Read More

How to Set Up Your Walk Team 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 annual Sickle Cell Matters Walk brings us new friends and new donors every year. But, we rely on our current supporters to get the word out and introduce our work to others. This year we’ve set targets of 10 major sponsors, 100 fundraisers/teams and 1,000 participants to help us reach our fundraising goal of $100,000. Here’s how you can help us get there. STEP 1 - Donate or join/create a fundraising team To donate: Click the DONATE button at the top of the page . You can then use the arrow to select a specific team to donate to or donate to the overall walk, choose how much you'd like to donate, and whether it will be a one-time or recurring donation. Follow the prompts from there. To join or create a team: Click the JOIN button at the top of the page . You'll then have the option to join an existing team or start your own team. When you join a team, the system automatically creates a fundraising page for you that you can share with others. If you do not want to create your own fundraising campaign, close the popup box and click the donate button instead. To create your own team, you'll need a team/campaign name, fundraising goal (the default is set at $1,000, but you can change that) and a story about your team. The default story is the one used by the overall Walk campaign. From there, you'll follow the prompts to complete team set up. Registration is now optional. If you choose to register, here are the instructions:​ ​ Click register and follow the self-guided instructions to select your tickets (16 & over ($20), child ($10), and young child (free). Enter your buyer and payment info. You’ll be offered the options to fundraise as a team, fundraise as an individual, or continue without fundraising. If you select fundraise as an individual, you’ll need to enter a campaign name and your goal. If you select fundraise as a team, you can choose to join or create team: Join gives you a list of teams you can choose from. To create a team, you need to enter a campaign name (your team name) and your goal. You’ll then be guided to finalize your purchase. This will complete your registration as a Walk participant and team fundraiser. STEP 2 - Customize Your Team Campaign OPTION 1 - You created your team through your Walk registration or by clicking the Join button. ​ You’ll receive email receipts for your payments and a separate email confirming your team set up. To manage your team, you’ll need to click the Manage Campaign button in the email, which takes you to the GoFundMe Charity web page. Sign up for an account using the email you registered with. You’ll then be able to see the campaign – team – you started. Now you can customize your team page and invite others to join your fundraiser as team members. Add photos and videos, personalize your team’s story, and send customized update emails to your team. Tools for Managing Your Team (You'll need to be logged into your account to view this information.) OPTION 2 - You're trying to return to your team page (1) Go to our Walk campaign page on Charity GoFundMe : (a) If you aren’t already logged in, click the graphic in the upper right hand corner of the page. You’ll get a drop-down menu. Click SIGN IN and enter the email and password you used to create your team campaign. From there, go back to the graphic in the upper right hand corner. Click on CAMPAIGNS in the drop-down menu. OR (b) If you’re already logged in, click the graphic in the upper right hand corner of the page. You’ll get a drop-down menu. Click on CAMPAIGNS in the drop down menu. (2) Your team should appear on the page. Click EDIT. A Team Page box will appear. Click EDIT again. (3) Under the tabs you can do the following: CONTENT: you can add photos, video, your story and your goal. Be sure to click SAVE! DESIGN: You can create your Facebook share post by adding a photo and brief text. Be sure to click SAVE! SETTINGS: Will give you the direct URL for your team (e.g. charity.gofundme.com/cue-the-cure), and decide whether you want to allow people on your team to create their own fundraisers, share your campaign, and more. Be sure to click SAVE! You’ll find additional tools to manage your campaign here . (https://charitysupport.gofundme.com/hc/en-us/articles/360035656131-Tools-for-managing-your-teams- ) STEP 3 - Start Fundraising You’ve set your goal, now how to you reach it? Exceed it? ​ Do you work for a company that sponsors events or activities? Offer them the opportunity to support your team or sponsor the Walk . Invite your friends, family members, social groups, clubs, parents of your child’s friends, co-workers, etc., to join your effort. Do you have a skill you can put to work to help raise money? Something you can do virtually while we’re staying home and staying safe? Hustle lessons, tutoring, voice or music instruction, baking (customers can pay you with CashApp or PayPal and pick up items from your porch when they go out grocery shopping or vice versa). Map out your participant strategy. For a $500 team goal, you could target 35 people at $15 each, 25 people at $20 each; 20 people at $25 each; 15 people at $35; 10 people at $50, 5 $100 donors, or one very generous $500 supporter. More than likely, your team will use a variety of donor amounts to reach its goal. Invite five people to (1) each donate $20 and (2) each invite another five people who’ll donate $20, and so on. Hold a shoe size fundraiser: Email friends and family members to donate the amount of their shoe size to join your team. (If you wear a 10, you donate $10, etc.) Use the built-in links to promote your team's campaign on Facebook and Twitter. 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 or team setup - email Kristal Johnson Sponsorships - email Stefanie Worth Vendor Information - email Tracie Conic

2019 Sickle Cell Matters Walk Become a Sponsor Become a Vendor

about us The Sickle Cell Disease Association of America - Michigan Chapter has been a leader in the sickle cell community since 1971. We are committed to improving the lives of people with sickle cell by keeping our mission at the center of everything we do. ​ OUR HISTORY SICKLE CELL CENTER Our success all started with the vision of Dr. Charles F. Whitten. His daughter Dr. Wanda Whitten-Shurney continues the work. Read More > OUR IMPACT EVERYBODY COUNTS Numbers, numbers, numbers. But here at SCDAA-MI, every statistic represents a real person we fight for every day. Read More > OUR BOARD LEADERSHIP MATTERS Our board members provide mission and operational oversight with passion, dedication, and expertise. Read More > OUR STAFF 200 YEARS The SCDAA-MI staff brings more than 200 years of experience to its mission of changing the world of sickle cell. Read More >

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: (989) 755-7752 Benton Harbor/Kalamazoo Area: (269) 927-5629 Grand Rapids/Muskegon Area: (616) 243-1868 ​

SICKLE CELL 911: FAST ACCESS TO GUIDELINES & BETTER CARE Empowering medical professionals to implement evidence-based sickle cell action. Amplifying the patient's voice in care. OPIOIDS & SCD NIH GUIDELINES COMPLICATIONS ASH POCKET GUIDES ABOUT SAFE(R) SCD EDUCATION Learn more about implementing SAFER for sickle cell patients in your medical practice, facility, hospital system or agency.

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

SCDtranstion support We want to make it easier to find credible, useful information that helps make it a little easier to live with sickle cell. Ideas for content are welcome! CLINICAL TRIALS Research into treatments for sickle cell are at an all-time high. Once a new possibility is discovered, it moves through a series of further studies and approvals that include clinical trials. Without the brave patients who come forward to test new approaches, new treatments couldn't make it to market. Here's a list of NIH-funded trials for sickle cell currently underway. Source: National Institutes of Health SICKLE CELL GLOSSARY A diagnosis of sickle cell comes with its own language. If you're newly-diagnosed, the words can be overwhelming. As research evolves and new discoveries about living with the disease come to light, new terms will be added to conversations. This glossary will serve as both an introduction and a refresher for those who need it. Source: Missouri Dept. of Health & Senior Services UNDERSTANDING MEDICAL SPEAK Do you know what your doctor just said to you? Even if you ask for clarification on site, you might forget a few things before you reach your next destination. Or you may be surfing the internet and come across unfamiliar terms used in your medical care. This dictionary provides definitions in every day language to help you better understand your condition. Source: Medical Library Association NIH - HEALTH MAINTENANCE FOR SCD Click the image for a PDF of the NIH guidelines and recommendations for the health maintenance of people with sickle cell. (Approx. 40 pages) Read and provide a copy to your primary care physician. Click the yellow button to go directly to the full NIH document. Source: National Institutes of Health CDC OPIOID CLARIFICATION FOR SCD In February 2019, the CDC clarified its opioid guidelines in a letter to ASH stating its guidelines were not intended to manage the complexities of sickle cell. The CDC instead refers providers to the NIH guidelines for proper care. Access the full letter. Source: American Society of Hematology NIH - TREATMENT GUIDES FOR SCD Click the image for a PDF of the full NIH guidelines and recommendations for the management of sickle cell disease (161 pages). Click the yellow button to go directly to the full document on the National Institutes of Health (NIH) web site. Source: National Institutes of Health PASSPORT TO HEALTH TOOLKIT Dr. Wanda Whitten-Shurney's Passport to Health Toolkit is a great source of information for maintaining your health. (Join us for an educational program to receive the backpack that goes with it. *While supplies last!) Source: Dr. Wanda Shurney TIPS FOR TRIPS TO ER Emergency room visits are a frequent course of action for people with sickle cell. The CDC provides this handout with suggestions for talking with physicians and navigating the experience. Source: Centers for Disease Control SICKLE CELL FACTS & FIGURES The American Society of Hematology (ASH) provides this clear and thorough handout with facts and figures to help educate yourself and others about the biology and impact of sickle cell disease. Source: American Sociiety of Hematology Looking for a hematologist? Try this zip code-based search . (We do not endorse the physicians listed. Use proper care in researching their expertise.) You can also contact our office for suggestions provided by existing patients/clients. Other informational resources

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!

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

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