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SCDAA-MI SICKLE CELL DISEASE ASSOCIATION OF AMERICA - MICHIGAN CHAPTER ​ OUR MISSION: 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. Sickle cell is a complex biopsychosocial condition affecting every blood vessel, organ, and system in the body. While its severity impacts each individual uniquely, sickle cell’s most common visible presentation is excruciating, unpredictable pain. However, the condition’s less visible complications of continual hemolytic anemia and vascular and organ damage are silent, but life-shortening, ramifications suffered by every individual with sickle cell. To play, press and hold the enter key. To stop, release the enter key. SCDAA-MI provides education, assistance, and advocacy for individuals living with and families affected by sickle cell disease. Our services are available throughout Michigan and span lifetime needs. OPPORTUNITIES TO LEARN - SHARE - DISCOVER CHEAT CODES STATE OF SICKLE CELL DISEASE EXPLORE TREATMENTS WAYS TO ENGAGE WITH SCDAA-MI NEWS & MEDIA SPONSORS & ALLIANCES QUESTIONS ABOUT HYDROXYUREA WE'RE NOW WORKING REMOTELY TO HELP PROTECT OUR COMMUNITY. PLEASE CALL FOR ASSISTANCE. THANK YOU! DETROIT OFFICE 18516 James Couzens Fwy Detroit, MI 48235 Mon - Fri: 9 a.m. - 5 p.m. ​​Special Event Hours as Posted CONTACT US Detroit/SE Mich: (313) 864-4406 or ( 800) 842-0973 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 SATELLITE OFFICES Adult Clinic Caseworker at DMC: (313) 864-4406 Benton Harbor/Kalamazoo Area: (313) 505-4081 Grand Rapids/Muskegon Area: Jackson/Lansing Area: (800) 842-0973 (616) 788-9816 Saginaw/Flint Area: (989) 372-0256 THANK YOU TO OUR FUNDERS & SPONSORS

Career Opportunities at SCDAA-MI The Sickle Cell Disease Association of America – Michigan Chapter (SCDAA-MI), offers education, assistance, and advocacy to individuals living with and families affected by sickle cell disease. SCDAAMI provides counseling, support groups, referrals for financial and medical help, and connects students and job seekers with school, college and employment assistance, in addition to raising public awareness and sending children to summer camp each year. The agency also coordinates newborn screening for babies born in Michigan and conducts on-site blood testing to diagnose sickle cell trait and disease. All SCDAA-MI employees play a vital role in achieving our mission to improve the quality of life for people with sickle cell. ​ ​ We currently have no job opportunities at this time. ​ ​ The Sickle Cell Disease Association of America - Michigan Chapter is an Equal Opportunity Employer. jobs/ careers

2019 holidays Camp Cancellation2 WSU 02282020 Whitten-Shurney MD Register2 GivingTuesdayNow Walk promo IMG_0946 SCDAAMI Stabenow meeting Ahmar TEDx IMG_0943 iseeu events Mark your calendar and join us for fun, educational, advocacy, and celebratory events throughout the year. (Virtual for now, of course.) SCDAA-MI Upcoming Events Download the full calendar of events . here Events subject to change. A weekend of awareness and action for 2020 World Sickle Cell Day FRIDAY, JUNE 19: #MaskUp4SickleCell for World Sickle Cell Day Grab a red mask and get ready to #MaskUp4SickleCell on World Sickle Cell Day. This is a day to create awareness and inspire action among individuals with sickle cell and the allies in our community. On Friday, June 19, put on your red mask (whatever red cloth you have handy to use), and head over to Facebook to post a selfie. Have fun and edit your photo with a note about what your mask represents for your life with sickle cell and then write a post about what's #BehindTheMask . Invite your friends and family to join in supporting the cause by posting themselves in red masks, too. We'll have a special frame you can use on Facebook. You can also take a screenshot of that photo to post on Instagram, Twitter and SnapChat. Be sure to tag @sicklecellmichigan so we can share your post. Watch our this week for the latest updates and how to join the full campaign. You can also to download a step-by-step guide on how to participate. social media pages click here SATURDAY, JUNE 20TH: Virtual Graduation Open House Congratulations Class of 2020! We're recognizing our graduating sickle cell Warriors with a Virtual Open House on Saturday, June 20 as part of our World Sickle Cell Day weekend. Do you know someone who should be included? To be eligible, the student must have sickle cell, live in Michigan and be a December 2019 or Spring/Summer 2020 graduate from high school, college or trade school. Children of individuals with sickle cell who are graduating within these time frames are also eligible. The graduate will need to complete an information form and send us photos no later than midnight, Sunday, May 31. For all the details, please visit our page. Spread the word! Class of 2020 SUNDAY, JUNE 21: Sickle Sabbath We invite you to mark our first Sickle Sabbath in your place of worship on Saturday, June 20, or Sunday June 21 (depending on when you observe your sabbath). While sickle cell disease predominately affects people of African, Latino and Middle Eastern descent, it can affect anyone of any ethnicity or nationality. All faiths and denominations are encouraged to join us in educating their congregations about sickle cell disease and the importance of knowing your sickle cell trait status. Sickle Sabbath flyers, fact sheets and a social media graphic are available on our web site at . Participation is free, however, love offerings that day are welcome to support our education, outreach and advocacy services. www.scdaami.org/sicklesabbath To join the event, talk with your worship leader or health ministry and share the Sickle Sabbath materials for distribution to your congregation members. We also encourage you to post and share the information on social media pages. For additional information, please or call 313.864.4406. email us Have questions? Need info? Want to send an idea for an educational topic? Contact us at or 313.864.4406. info@scdaami.org

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? to us!) Email it

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 . (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. zip code-based search Other informational resources

Your gift to 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. ​ If you chose to make your gift anonymously, your name will not be listed in any materials where we might recognize donors. ​ You will receive electronic receipts from PayPal Giving Fund. We will email a gift acknowledgement to the name and email address you provided. Thank you for your support! donation confirmation

The Sickle Cell Matters Virtual Walk program starts at 10 :15 a.m. EST here and on Facebook @SickleCellMichigan! YOUR GUIDE TO THE daY* *Program times are approximate You can still donate to the 2020 Sickle Cell Matters Virtual Walk through September 30th. We appreciate your support! Donate to the cause or a team Click the image to download a PDF version of the day's agenda. 10:15 - WELCOME REMARKS SCDAA-MI CEO & Medical Director, Dr. Wanda Whitten-Shurney Honorary Chair, Deborah Smith-Pollard Honorary C-Chair, Dr. Ahmar Zaidi, "Dr. Z." ​ ​ ​ ​ ​ ​ ​ ​ ​ 10:21 - #SICKLESLIDE Join Dr. Shurney and the staff of the Bottomless Toy Chest in the #SickleSlide ​ ​ ​ ​ ​ ​ ​ 10:24 - WARRIOR RECOGNITIONS Tribute to Fallen Warriors - Those We've Lost 2020 Graduation Open House Celebration Salute to Legacy Warriors - Those 40 & Over ​ 10:37 - MEET OUR SPONSORS Greetings from Medunik USA & What You Should Know About Sickle Cell Anemia Wayne County Community College District Tour Emmaus Life Sciences - About Endari ​ 11:14 - PRODUCTS & SERVICES Pfizer - Functional Fluidics Sick Cells - Versiti - Terumo ​ ​ ​ ​ ​ ​ ​ ​ 11:16 - GIVEAWAYS & AWARDS 1st & 2nd Place Fundraising Teams (as of 9/12) Most Team Members (as of 9/12) T-Shirt/Poster Design Contest Winner Giveaway Winner From All Participants (as of 9/5 ​ 11:20 - TIME TO MOVE! Now's the time to move how you choose. Take your walk, do a little yoga, or head out to your ballot box to drop off your election ballot. Be sure to post your photos u sing #SickleCellMattersWalkMI #SickleCellMatters #SickleCellLivesMatter ​ Dr. Wanda Whitten-Shurney Deborah Smith-Pollard Dr. Ahmar Zaidi Thank you for making our 2020 Sickle Cell Matters Virtual Walk a huge success! DONATE NOW Our 2020 Sickle Cell Matters Walk sponsors!

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 . 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. top of the page To join or create a team: Click the JOIN button at the . You'll then have the option to join an existing team or start your own team. top of the page 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 frequently to see how your campaign is doing and what the competition is up to. leaderboard 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

2020 Sickle Sabbath Any Sunday Right click on the image above to download a photo you can use on your social media pages. Sickle cell disease can affect anyone of any nationality or ethnicity. ​ We welcome all faiths to join us in educating their members about the prevalence of sickle cell disease, how it's inherited, and why it all starts with being certain about your sickle cell trait status. Support us any time of the year! Right click on the image above to download a you can pdf flyer share with your congregation. Right click on the image above to download a you can pdf fact sheet share with your congregation. Right click on the image above to download a . Please complete and return this form to our office after your service pdf participation form . If you have any questions or need additional information, please email us at or call 313-864-4406. info@scdaami.org Thank you to the congregations that supported Sickle Sabbath as part of our 2020 World Sickle Cell Day celebration ! If you have not submitted your participation form, please download and return your information today so we can say thank you! June 20-21, 2020 World Sickle Cell Day Sickle Sabbath Participation Form