SCDAI News You Can Use!
Happy New Year!
We have plenty of work, advocacy, education & fundraising to do sooo
let's jump right into 2020!
Check out some of our amazing patients & families who were highlighted and included in the two media opportunities below with the Chicago Tribune and the New York Times Weekly! Remember to keep in touch with us so as opportunities and requests for patients & family involvement arise we can reach out to you to share your story!!! Also please scroll down to read and learn more. Our 2020 calendar of events/programs will be finalized soon so stay posted as we confirm dates etc..
Sickle cell disease is complex on its own, but black men ...

Doctors didn't expect Marqus Valentine to live past age 5. The prognosis was so certain that the Valentine family was granted a free trip to Universal Studios to the set of "The Ghostbusters" from a foundation as a dying wish. Although Valentine...

Read more
The Weekly | A Teenager's Breakthrough Gene Therapy for...

transcript Doctors reset Helen Obando's DNA in an effort to cure her of a painful genetic blood disorder. She's the youngest person to receive the treatment. [MUSIC PLAYING] Sometimes it just comes out of nowhere. Pain will start in my arms, then ...

Read more
Did you know that we now have 4 FDA Approved Sickle Cell Treatment options?

Please click on the drug names below to learn more about each of them and to inquire about these options for yourself or for your loved one(s) with Sickle Cell Disease in your life!

(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
Sick Cells, the Sickle Cell Disease Association of America (SCDAA) and a multi-disciplinary task force are working with the Institute for Clinical and Economic Review (ICER) to inform the evaluation of the clinical and economic impact of new treatments for sickle cell disease (SCD). A critical input to ICER’s evaluation is ensuring the voices of the SCD community are elevated and heard. As a collaborative group, we are aligning our efforts to inform the public of the opportunity to participate in the patient and caregiver survey, as well as the details surrounding how to submit responses.

The Survey
We are asking patients and caregivers to complete the “My Life with Sickle Cell Disease” survey that is live today ( Thursday, January 16 th ) . The results of the survey will impact the ICER review in several ways:
1.      It will allow ICER to more accurately measure the impact SCD has on day-to-day activities.
2.      It will give caregivers a voice, which is often missing from clinical trial data.
3.      It will help ICER put a price tag on some of the expenses that result from SCD. Specifically, the survey will capture information about out-of-pocket costs.
There are important areas of ICER’s report that may lack data, so completing the survey can help inform these critical pieces of the report. 

Click Link below to Participate!

“My Life with Sickle Cell Disease” Survey Link:

Survey opportunity #2
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.

Call: 773-879-9714
Sickle Cell Advocacy/Policy Opportunities!

Illinois Rare Disease Day this year is on Wednesday, March 4, 2020 at the State House Inn, 101 E Adams St, Springfield, IL 62701 from 9:00am-12:00pm. Join patients, families, caregivers, medical professionals and industry representatives at this important event to discuss with Illinois Legislators the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their families here in our great state of Illinois. Following the presentations and lunch there will be an opportunity for advocates to visit legislators offices and speak with them and/or their staffers.

Registration is available for the event on
Sickle Cell Trainings/Education Opportunities!

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. 
STAMP trainings are virtual grand rounds, where patient cases are presented, and hematologist share their expertise and provide tele-mentoring support to primary care providers. Upon requests, on-demand hematology consultation and co-management services when caring for low-complexity patients with sickle cell disease. 
STAMP will focus on the basics of sickle care disease care for adults.
Primary care physicians, internists, family physicians, nurse practitioners, physicians, nurses, social workers, psychologists, hematologists, oncologists, emergency medicine physicians, hospitalists, pediatricians,  psychiatrists and gynecologists are eligible to attend the training.
Although the primary cities for recruitment for STAMP are providers most likely to serve patients living with sickle cell disease
Illinois- Rockford, Freeport, Peoria.  However, health providers in rural area most likely to serve patients living with sickle cell disease and want to attend the tele mentoring session, please inform them of this opportunity.
There is no cost to attend the STAMP training.  Participants can earn continuing education units.
Click on link below for additional information.
Partnership Opportunities with SCDAI!
Community Involvement
The Sickle Cell Disease Association of Illinois is looking to identify & book with multiple community organizations/groups that can & would be interested in hosting approx 50 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 last two Tuesdays or Thursdays of the month for possible dates (February-December 2020)

Please let us know if your organization would be interested in choosing 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! Thank you in advance!  

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:

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