Search

media Keep up with SCDAA-MI news, articles and information from a variety of outlets on issues affecting sickle cell, and videos and webinars to keep you up-to-date about what's happening in the #sicklecell community. SCDAA-MI OUT & ABOUT SCDAA-MI World Sickle Cell Day press release SCDAA-MI ANNOUNCES SAFE(R) INITIATIVE TO IMPROVE EMERGENCY SICKLE CELL CARE Effort aims to assist medical community in proper treatment of long-misunderstood disease February 26, 2020 Read more SAFE(R) provides medical professionals with quick access to an online portal at SCDAAMI.org/SickleCell911 that provides clinical practice guidelines for sickle cell established by the National Institutes of Health, sickle cell-specific opioid guidance from the Centers for Disease Control, as well as best practices and recommendations from the American Society of Hematology and other leading experts in sickle cell treatment. NHLBI Speaker "Thank you National Heart, Lung, and Blood Institute (NHLBI) for having me alongside these devoted advocates as a panelist for the “What is a Meaningful Cure?” panel discussion hosted by Dr. Wanda Whitten-Shurney . #CureSCI #sicklecell Thanks Teonna Woolford for the pic!! — with Velvet Brown-Watts , André Marcel Harris and Cassandra Trimnell at Hilton Washington DC/Rockville Hotel and Executive Meeting Center ." NEWS FROM AROUND THE COMMUNITY Toledo's Promedica Hospital has added an adult sickle cell clinic, the first of its kind in northwest Toledo. - WATCH & READ Get the clinic's info here Could gene therapy cure sickle cell anemia? - WATCH FDA approves first targeted therapy to treat patients with painful complication of sickle cell disease - READ FDA Approves Oxbryta™ (Voxelotor), the First Medicine Specifically Targeting the Root Cause of Sickle Cell Disease - READ Sickle Cell Disease Treatment Has Oklahoma Roots - READ Patient & caregiver focused videos All Categories Play Video Play Video 10:35 Sickle Cell Disease: a battle for equality, justice and respect | Ahmar Zaidi | TEDxDetroit What led a 46 year old Haitian artist to being kicked out of the hospital in the dead of winter? What led him to joblessness and homelessness? Part of the answer was in his blood...but most of the answer is us. Dr. Ahmar Zaidi is a pediatric hematologist who focuses on the care of people with sickle cell disease. He works at the Children’s Hospital of Michigan and is involved in research looking at pain in sickle cell disease patients. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx Play Video Play Video 03:54 Hour Detroit’s Excellence in Care Award Sharada Sarnaik, M.D., Pediatric Hematologist/Oncologists at Children’s Hospital of Michigan presented Hour Detroit’s Excellence in Care Award Play Video Play Video SCDAAMI Questions about Hydroxyurea OUR THEME: Together we can make a difference and "break the sickle cycle" OUR MISSION To maximize the life potential 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 Play Video Play Video 10:16 World Sickle Cell Day | American Black Journal Clip Air date: 6/19/16. Three women on the front lines in the battle against sickle cell disease: Wayne County Prosecutor Kym Worthy, who is Board Chair of the Sickle Cell Disease Association of America’s Michigan chapter; Dr. Wanda Whitten-Shurney, a pediatrician at Children’s Hospital of Michigan; and Anastasia Worthy, Youth Ambassador of the Michigan Chapter of the Sickle Cell Disease Association of America. Episode 4437/Segment 1. Play Video Play Video 02:00 2018 Access to Care Summit Educating and Empowering Sickle Cell Patients 2018 Access to Care Summit: Educating and Empowering Sickle Cell Patients. Original published link: https://www.youtube.com/watch?v=cEHsyeTbYT8&t=9s Play Video Play Video 00:31 Annual SCD Therapeutics Conference Experience Wanda Whitten Shurney, M D Wanda Whitten-Shurney, M.D., the CEO and medical director of SCDAA – Michigan Chapter, explains the value that the annual Sickle Cell Disease Therapeutics Conference offers to the SCD community in this short video. To learn more, visit scdconference.com. Original published link: https://www.youtube.com/watch?v=IYP1YkA0W3A Play Video Play Video 05:48 Sickle cell disease: Why is it hard to talk about our pain? BBC Stories Sickle cell disease is a serious and lifelong health condition that predominantly affects people from African or Caribbean backgrounds. Symptoms include bouts of pain, strokes, organ failure, and complications that can result in reduced life expectancy. Some consider it a 'silent illness' as those who have the condition rarely speak about it or the pain that they live with. We speak to 25 year-old Chris who lives with the disease and started his own initiative that aims to create conversation about the condition. Produced by: Kesewaa Browne Filmed and edited by: James Stewart Animation: Gerard Groves Commissioning Editor: Kimberley Rowell #sicklecell #sickle #bbc We are BBC Stories, a group of journalists making films, long and short, with the younger audience (18-24) in mind. The idea is to tackle issues which concern and impact this group of people. So think about anything from race and identity to mental health, money and much more. Play Video Play Video 05:07 Prodigy Talks With Real Health About His Life With Sickle Cell Anemia Hip-Hop Star Prodigy talks with Real Health editor in chief Kate Ferguson about his life with sickle cell anemia. Provider-focused sickle cell videos Play Video Play Video 10:35 Sickle Cell Disease: a battle for equality, justice and respect | Ahmar Zaidi | TEDxDetroit What led a 46 year old Haitian artist to being kicked out of the hospital in the dead of winter? What led him to joblessness and homelessness? Part of the answer was in his blood...but most of the answer is us. Dr. Ahmar Zaidi is a pediatric hematologist who focuses on the care of people with sickle cell disease. He works at the Children’s Hospital of Michigan and is involved in research looking at pain in sickle cell disease patients. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx Play Video Play Video 04:23 Burden of Sickle Cell Disease Expert clinicians discuss the prevalence and overall burden of sickle cell disease across the globe and recognize the role of community physicians in managing the disease. Play Video Play Video 01:19 Dr Ahmar Zaidi on Efforts Needed to Address Complications of Sickle Cell Disease Ahmar Zaidi, MD, pediatric hematologist-oncologist, Comprehensive Sickle Cell Center, Children's Hospital of Michigan, discusses the need for more efforts from both the medical community and regulators to address the psychosocial complications of sickle cell disease. Play Video Play Video 09:09 Freda Lewis-Hall and TLC's "T-Boz" Discuss Sickle Cell Disease on The Doctors Dr. Freda Lewis-Hall, chief medical officer of Pfizer, appears on The Doctors to speak about sickle cell disease, a blood disorder that primarily affects African Americans, and the genetic trait linked to the disease. She and The Doctors are joined by Tionne "T-Boz" Watkins, of the musical group TLC, who lives with the condition. Check your local listings to see the whole show and learn more at www.GetHealthyStayHealthy.com. Freda Lewis-Hall and TLC's "T-Boz" Discuss Sickle Cell Disease on The Doctors

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

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 200 YEARS 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 CEO SICKLE CELL CENTER Our CEO brings passion and drive by seeking to bring awareness in the community and caring for individuals living with sickle cell disease. She maximizes profits and fulfills leadership skills to carry out the mission of the organization. Read More >

our services For more information: Detroit Main Line: (313) 864-4406 Children's Hospital SC Clinic: (313) 745-5613 Sickle Cell Trait Counseling: (313) 864-4406 School/Job Assistance: (313) 595-0541 Email info@scdaami.org Contact our nearest satellite office: Detroit Area: (313) 613-7327 Benton Harbor/Kalamazoo Area: (304) 404-4229 Grand Rapids/Muskegon Area: (616) 788-9816 Jackson/Lansing Area: (517) 249-9528 Saginaw/Flint Area: (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. 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 CORONAVIRUS / COVID-19 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

sickle cell conditions 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. SCROLL 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

2020 Vendor & Exhibitor Form 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. Vendor and Exhibitor reservations are accepted on a first come-first served basis. Check or money order reservations must be mailed to be received by our office no later than September 10, 2020. Online reservations using a bank account or credit card can be made on this page up until September 15, 2020. Please make your display selection: * $100 - Vendor $500 - Exhibitor Vendor & Exhibitor Form Your support helps us change lives! Company/Organization Contact Name Address City, State Zip Code Email Address Phone Web Site URL and company/product description Service area (check all that apply) * Required Health & Wellness Financial Education Retail Youth Development Beauty & Fashion Other Please indicate your display choice: * Required Exhibitor experience - $125 Vendor experience - $50 Nonprofit supporter - $0 For nonprofit orders, please see instructions. SUBMIT YOUR ORDER Clicking submit will take you to the payment page. Exhibitor: $125 Virtual recognition to promote your business or organization: (1) pre- and (1) post-event social media mention; inclusion in our day-of online vendor presentation with business description and link included in Facebook post; listing on our web site’s Walk sponsor page; (1) business card ad on our web site's "classified" page; (1) business card ad in our fall e-newsletter. Vendor: $50 Virtual recognition to promote your business or organization: inclusion in our day-of online vendor presentation, name listing on our web site's "classified" page; (1) business card ad in our fall e-newsletter. Nonprofit: FREE Virtual recognition to promote your business or organization: name listing on our web site's "classified" page; (1) business card ad in our fall e-newsletter. You must complete your reservation manually and mail (see address below) or email along with a copy of your 501(c)3 IRS Determination Letter. Please note the following: Check or money order reservations must be received in our office by September 10, 2020. Make check or money order payable to SCDAA-MI. Mail to: SCDAA-Michigan, ATTN: Tracie Conic - Walk Vendor, 18516 James Couzens Fwy, Detroit, MI 48235 Online reservations using a bank account or credit card can be made through this page up until September 15, 2020. Questions? Please email Tracie Conic or call (313) 864-4406. Thank you for your support!

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

DONATE HERE!!! BECOME A SPONSOR Anchor 1 BECOME A VENDOR NOTICE! COMPLETELY VIRTUAL

External jobs/ careers Dedicated Career Opportunities The Sickle Cell Disease Association of America – Michigan Chapter (SCDAA-MI), offers external job postings that attract a diverse pool of qualified candidates, helping them find the right talent to drive growth and success in a environment that is suitable to their educational and experienced background. Please see below of a list of job positions that are available in other companies seeking individuals who qualify. Since we are a community based organization, are goal is to improve the well-being of the community it serves, whether that's through economic growth, educational opportunities, job opportunities, healthcare access, or social services Position Available: Bronson Careers The Sickle Cell Disease Association of America - Michigan Chapter and our affiliates are an Equal Opportunity Employer

Thank You Sponsors

2019 Sickle Cell Matters Walk Become a Sponsor Become a Vendor

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) SICKLE CELL 911 Resources for Provider Education Access/download a compilation of the NIH guides specific to SAFE(R). PARTNER WITH SAFER Improving Emergency Department-Based Care of Sickle Cell Pain "Presented in this article are 4 tenets of implementing guideline-adherent emergency sickle cell care gleaned from the available literature and continuous quality improvement efforts at our institution." . . ."Application of the principles discussed within can improve patient and provider satisfaction, quality, and safety." (From the American Society of Hematology) PDF Online American College of Emergency Physicians ACEP's Emergency Department Sickle Cell Care Coalition offers a substantial list of training and informational resources for medical professionals providing treatment in emergency and acute care settings here . Acute and Emergency Department Assessment and Treatment Sickle Cell Disease Care in the Emergency Department: Improvement Initiatives and Ongoing Research (1 hour) - a webinar from NIH, OMH and ACEP. SCD Core Concepts for the Physician and Nurse - Sickle Cell Pain (PowerPoint): A presentation from Duke University and The Johns Hopkins School of Medicine Emergency care for sickle cell – Podcast (1 hour): A focus on assessment and treatment. NOTE: The interviewer uses the term "sickler" throughout the podcast. This term in NOT well-received by sickle cell patients here. Sickle Cell is More Than Pain: Managing Complications Major Complications of Sickle Cell Disease and Nursing Implications - PDF download Sickle Cell Disease: When to Transfuse Learn about indications for blood transfusion in patients with sickle cell disease, the complications associated with these transfusions, and how you can help reduce the risk for these complications in your patients. Sickle Cell Disease TeleECHO Clinic - Didactic Video Series Project ECHO (Extension for Community Healthcare Outcomes) is an internationally recognized telementoring innovation that build clinician knowledge in diagnosing and treating complex disorders. Project ECHO connects local clinicians with experts from sickle cell centers to learn skills necessary to deliver high quality sickle cell disease care using this proven telementoring model. Via Washington University School of Medicine in St. Louis. Helpful Contextual Videos About Sickle Cell Disease Dr. Ahmar Zaidi at TEDxDetroit (10 min): Dr. Ahmar Zaidi, pediatric hematologist/oncologist at the Comprehensive Sickle Cell Clinic at Children's Hospital of Michigan discusses the systemic disparities that further threaten the well-being of people who live with sickle cell's life-threatening impact. Experts address the prevalence and overall burden of sickle cell disease across the globe and the role of community physicians in managing the disease via HCP Live Peer Exchange (5 min) Dr Ahmar Zaidi on Efforts Needed to Address Complications of Sickle Cell Disease (1 min): Ahmar Zaidi, MD, pediatric hematologist-oncologist, Comprehensive Sickle Cell Center, Children's Hospital of Michigan, discusses the need for more efforts from both the medical community and regulators to address the psychosocial complications of sickle cell disease. Ongoing Educational Opportunities "This practical toolkit provides clinicians with materials and resources to engage with patients and educate them about sickle cell disease. Use the toolkit with patients individually or in group education settings to help build a strong foundation for shared decision-making regarding treatment goals and preferences, transitions of care, and individualized treatment plans." Learn more . The U. S. Department of Health and Human Services Office of Minority Health offers the Sickle Cell Disease Training And Mentoring Program (STAMP) a free sickle cell disease telehealth series for primary care providers. Learn more . SOURCES: Medscape https://www.medscape.com/viewarticle/891436?src=par_cdc_stm_mscpedt&faf=1; Ward, R, Helman, A, Foote, J. Emergency Management of Sickle Cell Disease. Emergency Medicine Cases. August, 2015. https://emergencymedicinecases.com/emergency-management-of-sickle-cell-disease/. Accessed 02-18-2020; American College of Emergency Physicians, https://www.acep.org/by-medical-focus/hematology/sickle-cell/resources/. Accessed 04-28-2020. Prime Education LLC, https://primeinc.org/cme/monograph/3412/Transforming_Clinical_Outcomes_for_Patients_with_Sickle_Cell_Disease:_The_Power_of_Collaborative_Patient-Provider_Partnerships?utm_source=scdaa&utm_medium=email1&utm_campaign=83pr201. Accessed 09-11-2020.