~SCDAI News You Can Use~
March 2022
Lets March into Sickle Cell Awareness!
We Need You!
Please be sure to scroll all the way down
(we have a lot of good information to share with you :)!
Resources:
Dr. Willie Wilson $50 per car gas giveaway.

Thursday, March 17, 2022
Time: 7:00 a.m. - 10:00 a.m.

PRESS CONFERENCE:
THE MARATHON GAS STATION 8:30 A.M.

THE FOLLOWING STATIONS: 
9-Marathon 340 Sacramento Blvd Chicago, IL 60612


Chicago Low-Income Housing Trust Fund supports families who are struggling with meeting their rent payment obligations. As we know, housing and health go hand-in-hand. It is important that while you are focused everyday on living as healthy as you can that you also have a stable place to live. If for any reason you need assistance paying rent, please consider the Chicago Low-Income Housing as a benefit available to you. There is an income requirement. Please visit: www.clihtf.org Any additional questions feel free to reach out to Annissa Lambirth-Garrett Executive Director.

The Compassionate Friends https://www.compassionatefriends.org/
Upcoming Events/Programs
Sick Cells Ambassador Policy Forum March 22 & March 23, 2022!


(This forum is for current Ambassadors Only! If you are not currently a ambassador you can sign up using the link below)
Sickle Cell Disease Association of America (SCDAA) Virtual Advocacy Day April 5 & 6th, 2022
Sickle Cell Summer Camp registration is open for campers ages 7-15! Sickle Cell Summer Camp Volunteering opportunity is open! Summer camp dates are July 17-22, 2022.
THE ANNUAL Walk/Jog/Bike-A-Thon (WJBAT)
Be on the look out! Registration will be opening in April 2022! We will still have the virtual option for the entire month of September 2022 and will be securing the last Saturday (9/24/2022) for a in person walk/Jog/Bike-A-Thon :)
Save the Date 9/12/2022! Registration will be opening up soon!
Save the Date! A Precious Organization 10th Annual Walk For Sickle Cell in
Alton, IL
MONTHLY SUPPORT GROUP MEETINGS:
Click here to RSVP for Males Support Group Meeting
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.
YOUR ACTION/VOICE (Advocacy) IS NEEDED!
  • Federal Level Policy/Advocacy:
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 Sickle Cell Prevention, Care, and Treatment Program Act is important and needs full 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
oneSCDvoice has launched a new poll—What are the top 3 things you wish you knew more about regarding sickle cell disease?—and we’d like to collect as many responses as possible.
 
We would greatly appreciate your assistance with gathering responses:
 
Survey opportunity
There is an opportunity for sickle cell warriors to participate in a focus group to better understand the real-world implications of SCD. In order to participate in the focus group, you must be over 35 years of age and have not received a transplant or other curative therapy. To participate in this focus group or to learn more, click here to register
Survey opportunity
Survey opportunity
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
Ongoing Survey Opportunity

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.There are NOW 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 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.
English Brochure
Spanish Brochure
Sickle Cell Disease Association of Illinois | 773-526-5016 | E-mail | Website