~SCDAI News You Can Use~
November 2020
Please be sure to continue to scroll down
(we have a lot of good information to share with you :)!
The Annual Walk/Jog/Bike-A-Thon (WJBAT) was held Virtual this year Wednesday September 16th, 2020-Wednesday October 14th, 2020.
We set out for the first time to Safely Raise awareness and FUNdraise Virtually!
Thank you to those whom donated, picked up your WJBAT gear, wore masks, took pictures and participated!
We are Humbly Grateful!

Please see the Photo Recap below! If you missed out in joining us this year, we look forward to seeing you next year!
THANK YOU!!!!
THANK YOU!!!!
THANK YOU!!!!
SEE YOU
NEXT YEAR!
Upcoming Events/Programs
‌
Training provided by: NAMI Chicago
What: Mental Health Awareness
Date: Monday, 11/23/20
Time: 11am-1pm
Where: Zoom Virtual
REGISTRATION: CLICK HERE.
(If link doesn’t work, copy and paste this url: https://us02web.zoom.us/meeting/register/tZEqc-2hrzwuGdbyoxx3Itq7_SLc99fYaiJC)
Calling All Individuals with Sickle Cell Disease and their Caregivers! You are not alone! Please join an amazing support system below!

  • 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!
1.FEDERAL POLICY/ADVOCACY:

Fund Sickle Cell Movement!
Sick Cells is starting a collaborative movement to #FundSickleCell with Sickle Cell 101 to mobilize SCD patients and advocates across the country to help appropriate funds for the 
Sickle Cell Disease and Other Heritable Blood Disorder Treatment Act (S2465).
Over the next month, Sick Cells and Sickle Cell 101 will share more details on the bill and funding request, advocacy toolkits and actions everyone can take to inform their local legislators on why they need to fund SCD in the FY 2021 federal budget. 

2.LOCAL 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 why the Illinois Senate bill SB3107-Sickle Cell Prevention, Care, and Treatment Program Act is important and why it needs to be voted into the Illinois Legislation!

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!

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
A Duke University research study is seeking adults (18 and over) with SCD and parents of children with SCD to complete an on-line survey about your experiences with SCD and your thoughts about possible treatments for SCD.
  • A unique passcode is required to participate (you will receive this code from SCDAI)
  • You will be compensated for your participation!
To participate send us a email: sicklecelldisease-illinois@scdai.org to receive the link and passcode.
Survey opportunity 4

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
Did You 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 Virtual Support Group Meetings via Zoom! 

Time: 6-8PM in the evening. 
Dates: The 2nd to last Thursday of the month

Please let us know if your organization or another 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 & 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! :

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