~SCDAI News You Can Use June 2020~

(Please take the time to scroll down, read & share)
We hope & pray that everyone is taking the recommended safety precautions during this world Pandemic. We are continuing to remain accessible by communicating via email, phone, social media and our website  www.scdai.org .
Please stay tuned to our website!
Thank you for those whom had the opportunity to participate in this months Support Group meeting which took place on World Sickle Cell Day! Please see two of the three presentations below that were shared during the meeting! The third presentation can be accessed via our website due to size restrictions.
Recommendations for Covid-19
Sickle Cell Disease Preparedness


Please utilize the links below to stay updated regarding covid 19:

Illinois Department of Public Health (IDPH) Covid 19 (Coronavirus) Updates in English & Spanish.

Secure Sickle Cell Disease (SCD) Covid-19 Registry (# of Individuals with SCD that contracted Covid-19

Centers for Disease Control (CDC)

World Health Organization (WHO)
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.
Upcoming Events/Programs
Join our very own Dr. Lewis Hsu Friday June 26, 2020 3:30PM CST. Individuals with Sickle Cell Disease that participate will receive downloadable educational tools and a $20 digital Amazon gift card (you must complete the post-session survey to receive the gift card)
Join our very own Dr. Lewis Hsu Friday June 26, 2020 3:30PM CST.
Providers will receive 1.25 CME/CE (you must complete the post-session survey)
Monthly Illinois Statewide Sickle Support Group Meeting
Save the Date Thursday:
July 23, 2020 6 PM-8 PM

RSVP via SCDAI's website: Link coming soon!

Click on the flyer to the left to print
The Annual Walk/Jog/Bike-A-Thon (WJBAT)
Will be Virtual this year due to the Covid-19 Pandemic. Plans are underway for the Month of September (Sickle Cell Awareness month)
Registration Opening Soon! Stay tuned to our website!
A New SCDAI Brochure has arrived! Click here to download . Email us if you would like us to mail you a few copies.
SCD Resources/Information

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.
Did you know that we now have 4 Food & Drug Administration (FDA) Approved Sickle Cell Treatment drug options?

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.
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
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 2

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!
Immediate UPDATE/ACTION NEEDED!
Don't forget to keep the momentum and conversations going with your 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 or meet with your state senator, and other elected officials and let them know why this bill is important and why it needs to be voted into Illinois Legislation!
Click the link and type in your home address to find your elected officials.
Partnership Opportunities with SCDAI!
Community Involvement
The Sickle Cell Disease Association of Illinois is looking partner with multiple community organizations/group s 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! :

Marqus Valentine 1983-2020

Lafayette Jay Thomas 1969-2020

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!
Sickle Cell Disease Association of Illinois | 773-526-5016 | E-mail | Website