73 items found for ""
- Coronavirus | -scdaami-
Information for our sickle cell community during the COVID-19 pandemic Information surrounding COVID-19 changes rapidly. We'll continue providing updates here. Advisories HEALTH ALERT: What our Sickle Cell Community Needs to Know About the Coronavirus (COVID-19) from SCDAA PATIENTS RETURN TO WORK LETTER PROVIDERS SCD COVID-19 REGISTRY Be prepared, not scared! We encourage sickle cell patients to follow the guidance provided in the national Sickle Cell Disease Association of America's Health Alert and for everyone to practice sanitation and cleaning practices advised by the CDC, including avoiding crowds and gatherings (events, parties, church, etc.). Be aware that the virus can live on some surfaces for 2-3 days, and on clothing for unknown periods of time . Contact your doctor if you experience symptoms or have been in contact with COVID-19. Do you need medical insurance? Or a primary care physician (PCP)? Are you feeling underprepared or overwhelmed? SCDAA-MI staff is still working to meet your needs - just remotely. Please contact us with questions or for assistance at (313) 864-4406 or (800) 842-0973 or firstname.lastname@example.org . Information about COVID-19 COVID info Michigan COVID-19 News and Information COVID-19 guidance for sickle cell from the Centers for Disease Control (CDC) COVID-19 Info from Michigan Health Departments SCDAA-MI worksite protocols If you've been exposed to COVID-19 COVID exposure Resources for daily life during the pandemic Pandemic resources Click here for a (PDF ) of the guide. La guía está disponible en español . Links to food, education, mental health resources and more. Job help : Unemployment information, guidelines for returning to work, and physician letters EMERGENCY PODCAST ON SICKLE CELL AND COVID-19 Help with resources If you need assistance navigating any of the services or resources listed above, please 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) 451-0014 School/Job Assistance: (734) 494-2119 Email: email@example.com 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) 426-9259 Jackson/Lansing Area: (800) 842-0973 Saginaw/Flint Area: (989) 372-0256
- Donation Page | -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. Thank you for your support! donation page Donate Now How much are you donating? $15 $25 $50 $75 $100 Other First Name Last Name I'd like this donation to remain anonymous Company Street Address City, STATE Zip Email Address Donating in honor of: DONATE Thank you for helping us improve the lives of people with sickle cell!
- Advocacy and Legislation | -scdaami-
Your voice matters in the election process. The representatives we choose make decisions that affect access to healthcare, regional transportation, insurance laws, disability protections, prescription pricing and more. Join us as we speak out on behalf of individuals living with sickle cell and the legislation that affects them. OUR ADVOCACY PARTNERS Sickle Cell Disease Association of America Rare Disease Legislative Advocates Every Day Life Foundation Health Can’t Wait Coalition American Society of Hematology ARE YOU READY TO VOTE? To be eligible to vote in Michigan, you must be: A Michigan resident (at the time you register) and a resident of your city or township for at least 30 days (when you vote) A United States citizen At least 18 years of age (when you vote) Not currently serving a sentence in jail or prison Learn more about voting in Michigan here . Check your voter registration status here . Register online here . Absentee voting “Due to the constitutional amendment passed by voters in 2018, all eligible and registered voters in Michigan may request an absent voter ballot without providing a reason. They can visit their local clerk’s office for an absent voter ballot application or download one at Michigan.gov/Vote ” Michigan ballot drop locations You can take your absentee ballot to the drop box in your jurisdiction and track your ballot through the election process. advocacy & legislation Current issues we’re working on include: Securing coverage for new sickle cell treatments (We'll keep you posted!) DO YOU KNOW WHO REPRESENTS YOU? You can click here and enter your address to find your local, state and federal elected officials along with their names and contact information. Use the map to see Michigan's legislative districts . World Sickle Cell Disease Awareness Day in Michigan - June 19, 2020 2020 World Sickle Cell Day received legislative support this year as Rep. Ronnie Peterson introduced House Resolution #280 declaring June 19, 2020 as World Sickle Cell Awareness Day in Michigan. Rep. Peterson also introduced a bill to create a sickle cell license plate for Michigan. The bill received outstanding bi-partisan support. We are deeply grateful for these actions from our elected officials and the members of the Michigan Legislative Black Caucus who were able to join us at the capital. #BlackPatientLivesMatter Vote
- 2020 Walk Day | -scdaami-
Since we have announced our Save the date for our 2021 Sickle Cell Matters Awareness Walk, We look forward to your participation! Here are highlights from last year's walk..... Enjoy!!!! I'm a paragraph. Click here to add your own text and edit me. It's easy. 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! Meet the Sponsors
- 2020 Walk Sponsors and Vendors | -scdaami-
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.
- Site Map | -scdaami-
site map Our site is filled with valuable, credible information! You can explore its content here or use our search feature. 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 NIH health maintenance for sickle cell CDC opioid clarification for sickle cell disease NIH treatment guidelines for sickle cell disease Know Your Rights – The Joint Commission Speak Up For Your Rights – The Joint Commission Ask Your Advocate to Speak Up – The Joint Commission Passport to Health Toolkit 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.
- 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 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
- Client Feedback | -scdaami-
client feedback Volunteer Photo Release Client Feedback SCDAA-MI has been helping improve the lives of individuals with sickle cell for nearly half a century. How are we doing? We'd like to hear from you to help shape our work for the next 50 years. Use the form below to tell us how we've been able to help you, what we can do better, and to share your ideas for other services. Your voice matters! Thanks for sharing your feedback!
- 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 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
- Sponsors | -scdaami-
Thank You Sponsors
- Events | -scdaami-
2019 holidays Camp Cancellation2 WSU 02282020 Whitten-Shurney MD Register2 GivingTuesdayNow Walk promo IMG_0946 SCDAAMI Stabenow meeting Ahmar TEDx IMG_0943 iseeu 2023 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 Flyers will be uploaded in the future. WORLD SICKLE CELL DAY - MONDAY, JUNE 19, 2023 THE ANNUAL SICKLE CELL MATTERS AWARENESS WALK - SATURDAY, SEPTEMBER 9, 2023 (The Charles H. Wright Museum) FLINT MICHIGAN SICKLE CELL AWARENESS WALK - SATURDAY, SEPTEMBER 16, 2023 Have questions? Need info? Want to send an idea for an educational topic? Contact us at firstname.lastname@example.org or 313.864.4406.
- Conditions | -scdaami-
sickle cell conditions SCROLL Sickle cell disease is the most common heritable blood disorder in the U.S. It affects 100,00 people, most of them living healthier and longer lives than would've been possible one or two generations ago. The disease is chronic, complex and challenging. But at the SCDAA-MI, we are resilient and resourceful - committed to improving lives. We're here to win. DISEASE & TRAIT What & How Learn about the history, transmission and variability of sickle cell disease, and what we're discovering about trait. Read More PATIENT SUPPORT Find Answers You have questions, we're here to help you get answers. Cut through the internet chatter with credible tips, tools and insights. Read More TREATMENTS Is there a cure? A universal cure isn't here yet, but there are disease-altering treatments for children & adults that you should know about. Read More SAFE(R) Stay SAFER in the ER Learn more about our SAFE(R) initiative and the evidence-based guidelines in place for emergency sickle cell care. Read More