SCDAI News You Can Use March 2020!
Save the Dates below & join us!
(Please take the time to scroll down, read & share)
We hope & pray that everyone is taking the recommended safety precautions during this World Pandemic. For the safety of our families, friends and staff during this time, SCDAI will be practicing social distancing & operating remotely until further notice based on our state's updates & recommendations.

During this time we will be accessible & communicating via email, social media and our website  www.scdai.org . Please stay tuned to our website!
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.

Centers for Disease Control (CDC)

World Health Organization (WHO)
Immediate UPDATE/ACTION NEEDED!
Our Illinois Senate Bill 3107 passed unanimously through the Public Health Committee!!! We need your help in ensuring that your Illinois State Senator knows 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 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.
FYI!
  • 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 an 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
Monthly Statewide Sickle Support Group Meeting
Save the Date Thursday: April 23, 2020 6-8PM


Click on the flyer to the left to print
(Meeting locations will vary but there will always be a call-in option if you can't make it in person)
Annual Walk/Jog/Bike-A-Thon (WJBAT)
Save The Date July 11, 2020
Registration Opening Soon! Stay tuned to our website!
The Annual Management of Sickle Cell Disease Conference
Save The Date:
Friday November 13, 2020
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
If you are 21-35 years old with Sickle Cell Disease, and live in Chicago, IL you may be eligible to participate in this study (answering approx. 5 questions)!

Please contact Tyanna Qualls (BA, MHA) Doctoral Candidate of Philosophy Health Services, Walden University.

Email: Tyanna.qualls@walden.edu
Call: 773-879-9714
Survey opportunity 2 Click on flyers below
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 gift card and we will use the gift cards as giveaways to patients & families at various programs/events :) Thank you in advance!
Sickle Cell Advocacy/Policy Opportunities
The Sickle Cell Community Needs your Help!

1.
Illinois Senate Bill 3107 passed unanimously through the Public Health Committee!!! We need your help in ensuring that your Illinois State Senator knows 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 let them know why this bill is important and why it needs to be voted into Illinois Legislation!
Please click the link below to use your home address to find your elected officials. Find My Elected Official Please click here to see the status of the bill !

2.
Pening on the Coronavirs Pandemic:
Save the Date: Tuesday May 12, 2020 for Illinois Sickle Cell Advocacy & Empowerment Day at the state capitol!! We are planning a day trip with transportation down to Springfield to advocate and interact with state representatives and Senators. Details coming soon!
Current/Upcoming
Sickle Cell Trainings & Educational Opportunities!

#1-Target audience is primary care providers!

U.S. Department of Health and Human launched  STAMP - The Sickle Cell Disease Training and Mentoring Program.    STAMP is a pilot program to train primary care providers on the basics of sickle cell disease care. STAMP is a 6-month series of free trainings delivered using the Project ECHO platform, offered during January – June 2020 .  The first training will be held on January 8, 2019 noon Eastern Time. 
 
There is no cost to attend the STAMP training.  Participants can earn continuing education units.
 
Click on link below for additional information.
 
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#2 Target Audience is Patients, Caregivers, Providers

Increasing Appointment Attendance: A Vital Opportunity to Improve Health Outcomes for Those Living with Sickle Cell Disease
Announcement language for newsletter/email/listserv


Sickle cell disease (SCD) affects approximately 100,000 Americans, predominantly those of African descent. The inherited blood disorder may cause acute pain episodes, infection and other serious health problems that can affect every organ in the body. Comprehensive and coordinated care can drastically improve health outcomes. But, according to a recent national study, a majority of patients have had to miss appointments that have the potential to improve their health and quality of life.
 
To better support patients and understand what causes missed appointments, NICHQ conducted a series of interviews with patients and providers. Now, we're inviting all SCD stakeholders—health professionals, service providers, community partners, patients, and families—to join NICHQ for a live-webinar where we'll share our findings and facilitate a discussion on change strategies.
 
Register here to reserve your seat:  https://bit.ly/2SH6h6h

Partnership Opportunities with SCDAI!
Community Involvement
The Sickle Cell Disease Association of Illinois is looking to identify & book with multiple community organizations/group s that can & would be interested in hosting approx 40 patients/families with Sickle Cell Disease Monthly (ask: provide a space with seating, conference call in option...we have our own conference #.., presentation capabilities & possible refreshments) 

Time : 6-8PM in the evening. 
Dates : We are looking at the 2nd to last Thursday of the month to confirm dates (May 21, July 23, September 17, & October 22, 2020)

Please let us know if your organization or another organization would be interested in choosing a date (listed above) & 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

Over the last few months we have experienced the loss of a few of our beloved advocates/Sickle Cell Warriors! Please join us by sending up a special prayer to the families of:

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