~SCDAI News You Can Use~
September 2021
Happy Sickle Cell Awareness Month!
Please be sure to continue to scroll down
(we have a lot of good information to share with you :)!
SCDAI is celebrating 50 years as voice, supporter and advocate with and for the sickle cell community!
Please stay connected with us as we plan to do a 50 for $50 campaign this year and a celebration next year! Please be sure to reach out to us if any of your contact information has changed.Thank you in advance for all of your support and dedication to the Sickle Cell Community!
DON'T FORGET WE STILL HAVE SICKLE CELL AWARENESS MONTH MERCHANDISE!

  • IT'S NOT JUST A MONTH T-SHIRTS *$5 Donation Minimum
  • SICKLE CELL MATTERS BRACELETS *2 for $5
Covid-19 Corner
As we continue to fight COVID-19 in the United States, we are keeping up to date with the Sickle Cell Disease Association of America (SCDAA) Medical and Research Advisory Committee (MARAC) as they compile resources to assist the sickle cell community during the pandemic. The Centers for Disease Control and Prevention (CDC) lists sickle cell disease (SCD) as one of the populations vulnerable to severe COVID-19. SCDAA provides support to patients and CBOs assisting SCD patients during this time. 
In August Sick Cells launched a weekly interview series called "COVID Convos." This series is hosted every Friday at 4 p.m. ET/3 p.m. CT on Instagram Live and features short interviews with community leaders, faith leaders, medical providers and SCD warriors to talk about COVID-19, vaccines and SCD. Sick Cells will discuss everything from vaccine hesitancy to the Delta variant. Follow Sick Cells and share the page with your family and friends to get trusted, up-to-date information on how COVID-19 is impacting the SCD community and what you can do to be aware and protect yourself. 
Upcoming Events/Programs
THE ANNUAL Walk/Jog/Bike-A-Thon (WJBAT)
THE 2021
T-SHIRT Front and our Amazing Sponsors on the Back :)

T-SHIRTS WILL BE AVAILABLE FOR PICK UP AFTER LABOR DAY!
MONTHLY SUPPORT GROUP MEETINGS:
Announcements!:
Be The Match-Sickle Cell Connect

Sickle Cell Connect aims to connect sickle cell warriors with the resources and support to learn more about sickle cell disease and empower your treatment options. Created by Be The Match to build awareness of sickle cell disease, empower patients, grow the Be The Match registry and to save lives. To support you throughout your journey we have created a Warrior Package with useful free resources and tools.
 
Know that you’re not alone in this journey. Are you a Sickle Cell Warrior or a caregiver? Sign up to receive your Warrior Package today.
Caregiver Help Desk Launch
Sick Cells is thrilled to announce the launch of an exciting new project with Caregiver Action Network (CAN). A centralized collection of resources specifically for caregivers with a loved one with sickle cell disease. CAN's Caregiver Help Desk offers free support services to caregivers everywhere and now has the tools to connect caregivers in our community with the resources they're looking for.

For more resources click here for CAN click here
Calling All Individuals with Sickle Cell Disease and Their Caregivers!
You are not alone! Please join one of our many amazing support systems below from the comfort of your cell phone!
YOU DON'T WANT TO MISS OUT!

  • Did you know there is a Group me (mobile app) for adults with SCD in Illinois? If you are 18 & over with Sickle cell disease in Illinois and want to add yourself click this link . You can also download the app to your phone for convenience.

  • Did you know there is a Group me (mobile app) for Caregiver(s) (parent of individuals with SCD)? If this is you then click this link to add yourself. You can also download the groupme app to your phone for convenience.
Sickle Cell Disease Association of America, Inc. (SCDAA) will hold its 49th Annual National Convention virtually on October 12-16, 2021. This year’s theme is: Unstoppable: Working Together for Sickle Cell. View our program at a glance.
SCDAA’s Annual National Convention is a four-day conference designed to address the multifactorial aspects of sickle cell disease (SCD) and sickle cell trait (SCT). The conference fosters the exchange of the latest scientific and clinical information related to the disease through the offering of innovative symposia, training seminars, interactive panel discussions and special events.
The Annual Sickle Cell Disease Therapeutics Conference is a forum to discuss the latest advancements and future trends for treating patients with sickle cell disease. Conference attendees will hear presentations from healthcare companies, key opinion leaders, patients, policy makers and others.
YOUR ACTION/VOICE (Advocacy) IS NEEDED!
  • Federal Level Policy/Advocacy:

Fund Sickle Cell Movement!
Sick Cells has started a collaborative movement to #FundSickleCell with Sickle Cell 101 to mobilize SCD patients and advocates across the country to help appropriate funds for federal level policy/advocacy.
Sickle Cell Disease and Other Heritable Blood Disorder Treatment Act (S2465).

  • LocaL LeveL Policy/Advocacy:
Don't forget to keep the momentum and conversations going with your Illinois state representatives, elected officials, mayors and senators.

We need YOUR VOICE and help in ensuring that your Illinois State Senator & representatives know what legislation for Sickle Cell Disease would mean to you and your loved one with Sickle Cell Disease!

What do we need you to do? Call, email or meet with your state senator, and other elected officials and let them know your personal story and why the current Illinois Healthcare Reform House Bill HB158 which includes the Sickle Cell Prevention, Care, and Treatment Program Act is important and needs appropriations of funding!

Click the link below and type in your home address to find your elected officials.
Click here to see the Status of the Bill !
Sickle Cell Studies/Research & Survey
Opportunities Below!

We Need you Input! Decisions need to involve direct input from our Sickle Cell Community (patients & caregivers)! Please participate so your voice can be heard! Read and click below to complete or participate in a study or interview!
The community thanks you in Advance!!! See two opportunities below.


Survey opportunity 1
Survey Goal?
The goal of this survey is to examine what it means to be an individual with sickle cell disease that is “unaffiliated” or “disconnected” from sickle cell disease care. The survey seeks to answer the following questions:
     1. What barriers do individuals with sickle cell disease face when trying to access care?
    2. What keeps individuals with sickle cell disease from trying to access care?
    3. What are effective methods to bring unaffiliated individuals with sickle cell disease into care?
The data collected from the survey will provide useful information for the design of interventions to bring more people with sickle cell disease to evidence-based care.
 
Survey Participants? 18 & Over
 
Survey participants must be over the age of 18. We would like to especially reach adults with sickle cell disease who are currently or has been in the past unaffiliated from care. This means they do not currently receive care from a sickle cell disease specialist or did not receive care from a sickle cell disease specialist for more than a year at any point in their lives.
 
Note that we are looking for adults with sickle cell disease that meet the above criteria in the United States.
Survey opportunity 2
Survey Opportunity 3

When you sign up be sure to tell them that the Sickle Cell Disease Association of Illinois referred you! We will also receive a gift card that will be used as giveaways to patients & families at various programs/events :) Thank you in advance!
SCD Resources/Information
You need to Know! Are You Connected?

1.Do you know about the OneSCDVoice.com community?
Click here to view and join the online community!

2.Do you receive Sick Cells Newsletters? If no, Click Here to view and join!

3.Did you know that SCDAI is one of the many member organizations across the U.S of the Sickle Cell Disease Association of America (SCDAA)? Click Here to learn more about the SCDAA.

4.We have 4 Food & Drug Administration (FDA) Approved Sickle Cell Treatment therapy options? If you would like a brochure for any of the therapies below let us know!

Please click on the drug therapy names below to learn more about each of them! Please use this information to inquire at your next doctor's appointment about these options for yourself or for your loved one(s) with Sickle Cell Disease in your life!
We also have printed information at our office if you would like to have the information in hand when talking to your provider(s).




(Here's a video below from one of our partner organization (Sickle Cell Disease Association of America-Michigan Chapter) about Hydroxyurea.
Partnership Opportunities with SCDAI!
Community Involvement
The Sickle Cell Disease Association of Illinois is looking partner with multiple community organizations/groups that can & would be interested in joining our Monthly Statewide Virtual Support Group Meetings via Zoom! 

Time: 6:00PM-8:00PM CST. 
Dates: The 3rd Thursday of the month (some months may vary so keep a eye on the date)

Please let us know if you and or your organization would be interested in securing a date & partnering with us. We can learn more about your organization/group & your organization can learn more about the issues & current state of Sickle Cell Disease & Sickle Cell Trait in Illinois. Thank you in advance!  
IN LOVING MEMORY

Please join us by sending up a special prayer and love to the families of our Beloved, Fallen Sickle Cell Advocates/Warriors! :

Jared Anthony Glass 1997-2021

Nurse "Pat" Patricia Ann Bailey 1947-2020

Sirchester Wiley Jackson 1979-2020

Sheila Price 1955-2020

Marqus Valentine 1983-2020

Lafayette Jay Thomas 1969-2020

Reginald White 1971-2020

George Gaddy 1965-2020

Elijah Powell 1995-2020

Annette Delgado 1968-2019

Aaron Morris 1959-2019

Ronicia Otey 1990-2019

LaTisha Stallings 1980-2019

Please contact us and let us know if you have a loved one who had Sickle Cell Disease & has gained their wings! We are creating a page online (via our website) and a in person Wall of Fame tribute at our office! We want to pay respect and continue to show love to our amazing advocates and fighters who are no longer with us!
SCDAI Brochure
Call or Email us if you would like us to mail you a few copies.
Sickle Cell Disease Association of Illinois | 773-526-5016 | E-mail | Website