77 items found
- SCDAA-MI E-Newsletters | -scdaami-
Catch up on news and information from the SCDAA-MI E- newsletters Read the latest news SUBSCRIBE TO OUR E-NEWS September 2020 Special Edition Read web version Download PDF World Sickle Cell Day Alert Read web version Download PDF January 2020 (Winter) Read web version Download PDF Summer 2020 (August) Read web version Download PDF Spring 2020 (April) Read web version Download PDF November 2019 Read web version Download PDF
- Our Board | -scdaami-
Sickle Cell Disease Association of America - Michigan Chapter Board of Directors Chairperson Kym L. Worthy Prosecutor, Wayne County District Jeffrey Sherbow, Esq, 1st Vice Chair, Attorney, Sherbow Law Office Ms. Cheryl L. Haskett, Treasurer Finance Director & Consultant, YDB, Inc. Kathleen Neumann, Secretary Retired Regional Director, Judson Center Sharada Sarnaik, M.D. , Assistant Secretary Retired Director, Comprehensive Sickle Cell Clinic Children's Hospital of Michigan Sonja L. Banks, CEO, International Dyslexia Association, Inc . Barbara Cushing, M.D. Retired Pediatric Hematologist, CHM LeWanda Gipson Deputy Director, Matrix Human Services Deborah Smith-Pollard, Ph.D. Associate Professor, U of M Dearborn Beverly Watkins Systems Administration, Toyota our board
- 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.
- Get Involved Overview | -scdaami-
get involved Together our tenacity and commitment have greatly brightened the future for sickle cell: comprehensive pediatric care has become a medical standard throughout most of the U.S., allowing patients to pursue college educations, take on dream careers, marry and welcome extended families. At the same time, many challenges remain: awareness among the adult medical community lags behind pediatric expertise at the expense of patient health. Sickle cell still bears the weight of stigma attached to systemic discrimination. While research is on the uptick, treatments are limited. There is no universal cure. Your support matters in our quest for consciousness, equity, and a cure. Please join us today. DONATE The Sickle Cell Disease Association of America - Michigan Chapter thrives on the support of dedicated patients/clients, staff, volunteers, funders, sponsors, donors , and community partners . We've remained committed to our mission of improving the lives of people living with sickle cell disease for 48 years. Give today . ADVOCATE This is an exciting time for the sickle cell community as new treatments have recently become available and interest in research to find a cure has spiked. Yet, insurance hindrances, misplaced opioid restrictions, and ongoing systemic discrimination continue to block access to proper care and threaten the lives of patients. Raise your voice for sickle cell. VOLUNTEER There are always volunteer opportunities at SCDAA-MI for assistance at our annual Sickle Cell Matters Walk, encouraging an increased social media presence, office help, committees, and more. Complete our volunteer form to let us know you're interested, and we'll contact you when opportunities arise.
- Our Partners | -scdaami-
OUR PARTNERS SCDAA Member Organization As a Member Organization of Sickle Cell Disease Association of America, we are positioned to work with other local organizations and with the National office to execute events, fundraisers, programs, and projects. For more information about our national agency, click here (insert logo and link to website). Our achievements are possible because of the continued commitment of our dedicated staff, Board of Directors, and other volunteers. We also wish to acknowledge the financial support from the state of Michigan Department of Health and Human Services, Federal Health Resource [i]and Services Administration (HRSA), City of Detroit- Planning & Development Department and the many agencies, organizations and individuals which have enabled us to provide free services for our clients. The Cynthia Coles Circle of Friendship Baptist Church has been a steadfast supporter of our organization as well as Community Health Charities. We could not have met the challenges presented by sickle cell conditions without the assistance we have received from the total community. We are deeply grateful for your generous support over the years and we intend to continue to be worthy of it. Our promise is to continue delivering dedicated comprehensive services, with true compassion. CALL TO ACTION If you would like to join us in improving the lives of individuals living with sickle cell disease, please take a moment to send a tax deductible contribution. Thank you!
- Summer Camp | -scdaami-
summer camp Our summer camp experience provides a unique opportunity for our children to gain self-confidence and independence. It also helps parents overcome issues of over protectiveness which may occur when raising a child with a chronic illness. North Star Reach Virtual Fall Family Camp North Star Reach is continuing to keep the health and safety of campers, families, staff and volunteers their top priority. Therefore, they are continuing with virtual Camp-at-Home programming this fall for family camps instead of on-site programming. Below is their fall camp schedule, and a brief online registration form is now live at the Camp-At-Home website .
- 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 top of the page . You can then use the arrow to select a specific team to donate to or donate to the overall walk, choose how much you'd like to donate, and whether it will be a one-time or recurring donation. Follow the prompts from there. To join or create a team: Click the JOIN button at the top of the page . You'll then have the option to join an existing team or start your own team. When you join a team, the system automatically creates a fundraising page for you that you can share with others. If you do not want to create your own fundraising campaign, close the popup box and click the donate button instead. To create your own team, you'll need a team/campaign name, fundraising goal (the default is set at $1,000, but you can change that) and a story about your team. The default story is the one used by the overall Walk campaign. From there, you'll follow the prompts to complete team set up. Registration is now optional. If you choose to register, here are the instructions: Click register and follow the self-guided instructions to select your tickets (16 & over ($20), child ($10), and young child (free). Enter your buyer and payment info. You’ll be offered the options to fundraise as a team, fundraise as an individual, or continue without fundraising. If you select fundraise as an individual, you’ll need to enter a campaign name and your goal. If you select fundraise as a team, you can choose to join or create team: Join gives you a list of teams you can choose from. To create a team, you need to enter a campaign name (your team name) and your goal. You’ll then be guided to finalize your purchase. This will complete your registration as a Walk participant and team fundraiser. STEP 2 - Customize Your Team Campaign OPTION 1 - You created your team through your Walk registration or by clicking the Join button. You’ll receive email receipts for your payments and a separate email confirming your team set up. To manage your team, you’ll need to click the Manage Campaign button in the email, which takes you to the GoFundMe Charity web page. Sign up for an account using the email you registered with. You’ll then be able to see the campaign – team – you started. Now you can customize your team page and invite others to join your fundraiser as team members. Add photos and videos, personalize your team’s story, and send customized update emails to your team. Tools for Managing Your Team (You'll need to be logged into your account to view this information.) OPTION 2 - You're trying to return to your team page (1) Go to our Walk campaign page on Charity GoFundMe : (a) If you aren’t already logged in, click the graphic in the upper right hand corner of the page. You’ll get a drop-down menu. Click SIGN IN and enter the email and password you used to create your team campaign. From there, go back to the graphic in the upper right hand corner. Click on CAMPAIGNS in the drop-down menu. OR (b) If you’re already logged in, click the graphic in the upper right hand corner of the page. You’ll get a drop-down menu. Click on CAMPAIGNS in the drop down menu. (2) Your team should appear on the page. Click EDIT. A Team Page box will appear. Click EDIT again. (3) Under the tabs you can do the following: CONTENT: you can add photos, video, your story and your goal. Be sure to click SAVE! DESIGN: You can create your Facebook share post by adding a photo and brief text. Be sure to click SAVE! SETTINGS: Will give you the direct URL for your team (e.g. charity.gofundme.com/cue-the-cure), and decide whether you want to allow people on your team to create their own fundraisers, share your campaign, and more. Be sure to click SAVE! You’ll find additional tools to manage your campaign here . (https://charitysupport.gofundme.com/hc/en-us/articles/360035656131-Tools-for-managing-your-teams- ) STEP 3 - Start Fundraising You’ve set your goal, now how to you reach it? Exceed it? Do you work for a company that sponsors events or activities? Offer them the opportunity to support your team or sponsor the Walk . Invite your friends, family members, social groups, clubs, parents of your child’s friends, co-workers, etc., to join your effort. Do you have a skill you can put to work to help raise money? Something you can do virtually while we’re staying home and staying safe? Hustle lessons, tutoring, voice or music instruction, baking (customers can pay you with CashApp or PayPal and pick up items from your porch when they go out grocery shopping or vice versa). Map out your participant strategy. For a $500 team goal, you could target 35 people at $15 each, 25 people at $20 each; 20 people at $25 each; 15 people at $35; 10 people at $50, 5 $100 donors, or one very generous $500 supporter. More than likely, your team will use a variety of donor amounts to reach its goal. Invite five people to (1) each donate $20 and (2) each invite another five people who’ll donate $20, and so on. Hold a shoe size fundraiser: Email friends and family members to donate the amount of their shoe size to join your team. (If you wear a 10, you donate $10, etc.) Use the built-in links to promote your team's campaign on Facebook and Twitter. Check our leaderboard frequently to see how your campaign is doing and what the competition is up to. For additional information, please contact the following SCDAA-MI staff for specific assistance or call (313) 864-4406: Registration or team setup - email Kristal Johnson Sponsorships - email Stefanie Worth Vendor Information - email Tracie Conic
- Symptoms and Complications | -scdaami-
symptoms& complications Info You Should Know: Symptoms and Complications of Sickle Cell Disease (Although the language here is directed to parents, this list applies to both children and adults with sickle cell. When in doubt, please contact your medical provider or go to the hospital.) NIH NHLBI g uidelines for treating complications Anemia Your baby may have this condition if he/she lacks the number of healthy blood cells required to carry sufficient oxygen to the rest of the body. Some of the most common symptoms include paleness, low energy, breathing problems, and slower growth. Treatment: The doctor will consider the severity of the symptoms to suggest a treatment plan, but they may rely on antibiotics and blood transfusion to treat the condition. Acute Chest Syndrome It could be an extremely painful and serious situation because it restricts blood flow to the lungs. Some common signs and symptoms include chest pain, breathing problems, and fever. Treatment: The doctor may recommend treatment with blood transfusions, antibiotic medicine, pain medicine, and oxygen to help improve breathing. Pain Pain is common and happens when sickled cells restrict blood flow. Pain can be anywhere in the body – it can be in organs and joints as well. The pain may continue for a few hours or extend to days and even weeks. It is important to give your child plenty of fluids, maintain temperature, and keep them from high altitudes to limit pain episodes. Treatment: Some of the most common treatment options include heating pads, prescription pain medicine, OTC pain relievers like ibuprofen, and hydroxyurea to help produce a specific type of hemoglobin. Extended pain requires hospitalization and narcotic medications. Hand-Foot Syndrome A child may experience pain, coldness, or swelling in the feet and hands when the sickle cells affect the blood supply to these limbs. Treatment: The doctor may rely on certain pain-relieving medicine to treat the symptoms. Giving your child plenty of fluids may also help. Splenic Crisis Sometimes, sickled cells accumulate in the spleen and clog it. This leads to swelling that prevents the spleen from filtering blood in the body. Specific signs include weakness, pain on the left side of the belly, and a rapid heart rate. Treatment: The usual treatment option is blood transfusion. The doctor may also consider removing the spleen iif splenic crisis becomes a regular issue. Infection Your child may have to fight with several infections including the infection of the lining of the brain and lung infection. Signs and symptoms include breathing problems, fever, coughing, headaches, and pain in the bones. An oral temperature over 100.3 requires a trip to the emergency room to help prevent bacterial sepsis. Treatment: It is important to prevent an infection from happening by staying up to date on vaccinations. If your child gets an infection, your doctor may recommend some antibiotics to clear the infection. Taking antibiotics regularly may help prevent infections when your baby is between 2 months and 5 years of age. Stroke Those altered red blood cells may restrict blood flow to the brain, which sometimes leads to a stroke. The most common symptoms include weakness on one side of the body, severe headache, and changes in speech, alertness, hearing, or vision. Treatment: Your child's healthcare provider will first notice these symptoms and then ask for an ultrasound, called Doppler ultrasound, to determine your child's risk for stroke. Vision Loss Blindness and other vision problems may happen when these cells block blood supply to your child's eyes. Sometimes, the cells block the blood flow to a specific part of the brain that leads to vision loss. Treatment: A regular eye exam with an ophthalmologist is necessary to avoid such issues, but your doctor may also recommend additional eye treatment to prevent further damage. More on major complications and their treatments from the CDC
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- Conditions Overview | -scdaami-
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
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Thank you to Global Blood Therapeutics and the Sickle Cell Disease Association of America for helping us help Michigan individuals with sickle cell during the COVID-19 outbreak.
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Please make your selection below: Please make your selection below: Please make your selection below: Please make your selection below: Exhibitor Experience - $125 Vendor Experience - $50 Clicking the Buy Now button will take you to PayPal to make your payment. You can use your existing PayPal account or simply use a credit or debit card without an account. You will receive a payment receipt from PayPal. We will send confirmation of your reservation to the email address provided. Thank you for your support!