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  • Sponsors | -scdaami-

    Thank You Sponsors

  • SAFER | -scdaami-

    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 a compilation of the NIH guides specific to SAFE(R). Access/download 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 cards. SCD911 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, Stefanie Worth at the Sickle Cell Disease Association of America - Michigan Chapter. contact “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

  • SCM Walk Team Set Up | -scdaami-

    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

  • Donation Confirmation | -scdaami-

    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

  • COVID19 Family Resources | -scdaami-

    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 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 - from Harvard Health Reading 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 to provide low cost telephone and broadband internet service FCC program for eligible households (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 to enroll. Spectrum Wi-Fi hotspots are also currently open and free to use. 1-844-488-8395 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 if you live in an area with Optimum internet service, or call if you live in an area with Suddenlink internet service. 1-866-200-9522 1-888-633-0030 Free low-income internet from Cox: Until May 12, 2020, Cox is offering the first month of its low-income internet program, , for free. The internet service is also providing free phone and remote desktop support for technical support during that time. Connect2Compete AT&T: https://www.att.com/help/covid-19/ Talking with your children about COVID-19 National Association of School Psychologists Talking to Children About COVID-19: : Substance Abuse & Mental Health Services Administration Coping with Stress During Infectious Disease Outbreaks : CDC Talking with Children about Coronavirus : CDC Helping Children Cope with Emergencies : PBS Kids How to Talk to Your Kids About Coronavirus Should children be gathering while school is not in session? : 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 CDC Recommendation ? Fatherly Magazine Coronavirus is Here. Should Kids Still Have Playdates ​ Educational Websites and Apps Guidance and a variety of good online resources are available on the website. Common Sense Media ​ All Subjects ABC Mouse (Free 30 day trial) Khan Academy Khan Academy Kids Wonderopolis Parent Toolkit Literacy Scholastic Learn at Home Starfall (free audio stories for kids) Audible Math Code.org - Free coding courses for all grades Tynker - puzzles that use mathematical thinking Solve Me Puzzles Math Games PBS Kids 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 (Free 90 day trial) Adobe Connect 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 , or by dialing 2-1-1 (or ). United Way 2-1-1 1-800-552-1183 ​ ​ Returning to Work Michigan information for employers and employees Michigan guidance for manufacturing workers returning to work from SCDAA for physicians to provide patients and caregivers Template letters ​ 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

  • SCD Transition | -scdaami-

    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

  • Partner with SAFER | -scdaami-

    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.

  • About Us Overview | -scdaami-

    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 >

  • 2018 Gallery | -scdaami-

    2018 event gallery 2020 Photo Gallery 2019 Photo Gallery Awareness Campaign Launch 2018 SICKLE CELLebration Boll Family YMCA Detroit Saturday, September, 22, 2018 June 19th - World Sickle Cell Day! Saturday, June 9th, 2018 #Sicklecellmatters Awareness Walk Palmer Park, Detroit, Michigan Friendship Baptist Church presents The 42nd Annual Cynthia Coles Circle Benefit Luncheon

  • Site Map | -scdaami-

    site map Our site is filled with valuable, credible information! You can explore its content here or use our feature. search Home Highlights Coronavirus / COVID-19 Info & Resources Spring E-Newsletter Explore Treatments News & Media Sponsors & Alliances Advocacy & Legislation Locations Detroit Office Contact Us Satellite Offices Map About Us Our History Our Impact Our Board Our Staff Jobs/Careers Services Office and satellite location contacts Our Services Newborn screening Testing and genetic counseling Social work services Career development Public education Summer Camp Covid-19 information Conditions What Is Sickle Cell Disease? Prevalence of Sickle Cell Disease How Do You Inherit Sickle Cell Disease? Explore More In-Depth Information American Society of Hematology Centers for Disease Control National Institutes of Health The Problem with Sickled Cells (video) A Century of Progress A History of Sickle Cell Sickle Cell Trait Sickle Cell Trait Facts Know Your Trait Status Sickle cell trait info from the CDC NCAA Fact Sheet for Student Athletes Testing for sickle cell trait and disease Symptoms & Complicatons Symptoms and Complications Anemia Acute Chest Syndrome Pain Hand-Foot Syndrome Splenic Crisis Infection Stroke Vision Loss More info from the CDC Treatments Feb. 29, 2020 treatment workshop videos Bone marrow and stem cell transplants Medications Penicillin Hydroxyurea Endari Adakveo Oxbryta Transfusions Media News & Multimedia SCDAA-MI Out and About News From Around the Community Patient & caregiver-focused videos Provider-focused sickle cell videos Press Releases E-newsletters News archive Coronavirus / COVID-19 Info & Resources Section 1 Coronavirus / COVID-19 Info & Resources SCDAA sickle cell/COVID-19 guidelines Patient Provider SCD COVID Registry Contact info for Drs. Ahmar Zaidi and Michael Callaghan Assistance navigating resources Section 2 U of M COVID-19 Pandemic Resource Guide Resources for day-to-day living during COVID-19 Locate community resources by zip code Food Mental Health Internet & Device Access Talking with your children about COVID-19 Education and enrichment Ways to connect United Way 2-1-1 COVID-19 risk assessment Meals for children COVID-19 cases in Michigan SCDAA-MI Protocols CDC Recommendations for People at High Risk Section 3 Cheat Codes: Emergency Sickle Cell COVID-19 Podcast How to get tested for COVID-19 COVID-19 symptoms Section 4 Information from Michigan health departments What you need to know about handwashing Statewide resources and information flyer City of Detroit Water Restart Plan Coping with Coronavirus Anxiety Patient Support We’re working to keep you SAFER maintenance for sickle cell NIH health CDC opioid clarification for sickle cell disease NIH treatment guidelines for sickle cell disease – The Joint Commission Know Your Rights Speak Up For Your Rights – The Joint Commission Ask Your Advocate to Speak Up – The Joint Commission Toolkit Passport to Health Tips for trips to ER Clinical trials Sickle cell facts and figures Sickle cell glossary Understanding medical speak Looking for a hematologist? Other informational resources One SCD Voice Cheat Codes Podcast Living with SCD Self-Care Toolkit Get Connected Patient Powered Registry The Sickle Cell Podcast Generation S Get Involved Donate Ways 2 Give Why donate? Donate online Host a Facebook fundraiser Amazon Text to Give Kroger community rewards Check or money order Corporate partnerships 2020 Sickle Cell Matters Walk 2020 Sickle Cell Matters Walk Host Committee Our Donors Advocate 2020 Census information Current and recent issues we’re working on Advocacy training Are you ready to vote? Michigan voter information Our advocacy partners Do you know who represents you? Find your representative. Volunteer Sickle Cell 911 SCDAA sickle cell/COVID-19 provider guidelines SCD COVID Registry ASH COVID FAQs SAFE(R) card and accompanying NIH guidelines NIH and AHRQ ER triage guidelines NIH Sickle Cell Pain Algorithm How to conduct a sickle cell assessment (6 min video) High ER utilization and perceptions of addiction/drug-seeking behavior (3 min video) About the SAFE(R) Initiative CDC clarification on opioids for sickle cell disease NIH Guidelines NIH full recommendations NIH quick guide to recommendations NIH guidelines – acute care breakout (11 complications) ASH pocket guides for acute and non-acute care management Management of acute complications of sickle cell All pocket guides Cardiopulmonary and kidney disease Health maintenance and management of chronic complications Hydroxyurea and transfusion therapy About SAFE(R) SAFE(R) card How to partner Provider and patient anecdotes CDC opioid guidance for sickle cell HHS Asst. Sec’y for health comment Office of Minority Health statistic SCD Education Resources for provider education Improving Emergency Department-Based Care of Sickle Cell Pain American College of Emergency Physicians (ACEP) Resources Acute and Emergency Department Assessment and Treatment Sickle Cell is More Than Pain: Managing Complications Helpful Contextual Videos About Sickle Cell Disease Ongoing Educational Opportunities Events Event Calendar 2020 Sickle Cell Matters Walk Register today Set up your team Sponsor info Vendor reservation Volunteer Warrior Stroll Salute to Legacy Warriors Virtual Summit Leadership and Key Volunteers Who to contact 2019 Event Gallery Cynthia Coles Circle Luncheon, May 18 World Sickle Cell Day, June 19 Sickle Strong Empowerment Circle Balloon Launch, June 19 2019 Sickle Cell Matters Walk 2018 Gallery 2018 Sickle CELLabration World Sickle Cell Day 2018 2018 Sickle Cell Matters Awareness Walk 2018 Cynthia Coles Circle Benefit Luncheon Campaign Awareness Launch More Contact Us Client Feedback Volunteer Search Client Assistance Phone numbers to reach our patient advocate and social work staff throughout the state of Michigan.

Sickle Cell Disease Association of America -
Michigan Chapter, Inc.

18516 James Couzens Fwy, Detroit, MI 48235

(313) 864-4406 OR (800) 842-0973

info@scdaami.org

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Originators of the SAFER Initiative (c) 2020

© 2020 Sickle Cell Disease Association of America - Michigan Chapter, Inc. All rights reserved.

SCDAA-MI is a qualified 501(c)(3) tax-exempt organization. Tax ID Number: 38-1963640.