September is Sickle Cell Awareness Month

Shine The Light for Sickle Cell!

September 2024

Calendar of Upcoming Events

Let’s Shine The Light For Sickle Cell

Do Not Miss These September Events!

"Scientific Advancements in Gene Therapies: Opportunities for Global Regulatory Convergence"

September 4th, 2024 10:00 am to 4:00pm Eastern Time

Click to Register to Attend Virtually

Sickle Cell Disease Quality Measures Town Hall Meeting

FDA & CMS Sept 4, 2024 10:00am

Lighting of Blue Cross & Blue Shield Building

For Sickle Cell Awareness

**Tuesday September 3rd, 2024**

Drive by to see and take pictures

300 East Randolph St, Chicago, IL 60601

DreamNight! At Lincoln Park Zoo (Register and go!)

Friday September 13th, 2024 5:30 - 8:30pm

To register, see the flyer below

Adult Night Out!! (Registration coming soon)

Thursday September 19th let’s connect and have fun!

Sickle Cell in Focus 2024

SCIF Sickle Cell In Focus: An in person and live event streaming from Kingston Jamaica.

September 19 - 20 , 20248 a.m. - 5:30 p.m. CT

Virtual or in person. Click to Register

Sickle Cell Walk in Alton IL

Raising Sickle Cell Awareness 1 Mile at a Time

Saturday September 21, 2024

Click to register for the Walk

Inaugural HHS Sickle Cell Disease Summit!

Join Virtually! Free, Registration is Required

September 24, 2024 9:30 AM – 5:00 PM ET 

Click to Register for Inaugural Summit

Free Virtual 7th Annual Chicago Sickle Cell Summit!

Registration is required to participate. 

Thursday September 26, 2024 10:00 am - 3:00pm

Click Here to Register See the flyer below

WJBAT Walk, Jog, Bike-a-Thon

Saturday, September 28th, 2024 10:00-1:00PM

Check begins in at 9:00AM

To register or donate, see the flyer below

Hayes Park, Chicago IL

Can’t Miss Webinars

S.O.A.R. SCD Monthly Mental Health Series

link for September coming soon

Highlights

ASH SICKLE CELL DISEASE RESEARCH PRIORITIES– 2024 UPDATE –

Grace Acupuncture Study

MEDIC ALERT

Coming Soon

Don’t Miss Dream Night! at Lincoln Park Zoo!

September 13th, 5:30 - 8:30pm

Dinner from 5:30 - 7:30pm

I’m Going To DreamNight!

Register: click this link, or scan QR Code

For more information, please

email access@lpzoo.org.

Sickle Cell In Focus Conference

co-hosted by NIH

In Person, Kingston, Jamaica and Virtual

September 19th – Friday, September 20th, 2024

Description

The 17th annual Sickle Cell in Focus (SCiF) conference will be held in a hybrid format from Thursday, September 19th – Friday, September 20th, 2024, with in-person attendance held in Kingston, Jamaica. A streaming link will be sent to registered attendees interested in attending the conference virtually. The SCiF conference will once again be co-hosted by the National Heart, Lung, and Blood Institute (NHLBI) and The University of West Indies (UWI).

September 19 - 20 , 2024

Virtual or in person 8 a.m. - 5:30 p.m. CT

Click here to Register

FYI ASH 2024 Priorities Under Review

Some great things to look forward to...

The American Society of Hematology has submitted its 2024 priorities for review by stakeholder communities.

The following are part of their list as stated on their website.

According to ASH:

"To ensure that patients with SCD receive state of the art care, the American Society of Hematology (ASH) developed the following list of the top research and training priorities for the next five years. The list includes remaining unaddressed questions and specific research topics that could really move the field forward with the hope of curing SCD in the future. The priorities are not listed in rank order."

1. Research Priorities 
2. Identify Predictors of Disease Severity
3. Optimize the Use of Existing Therapies
4. Develop Novel Therapies
5. Strengthen Curative Therapies
6. Enhance Pain Research
7. Improve Access to Evidence-Based Care Through Innovative Healthcare Delivery Models
8. Determine the Effects of Quality of Care on Quality of Life
9. Investment in Sickle Cell Trait Research
10. Other Priorities 
11. Expand Global Initiatives
12. Support a Sustainable SCD Workforce

SCDAI has highlighted in red, some area sof particular interest, esp. for those with heterogenous disease. There is even focus on the Sickle Cell trait, which indicators show make persons more vulnerable to blood clots and kidney disease. We cannot ignore knowing our status, whether it be Sickle Cell Disease or Sickle Cell Trait.

This is very promising and an exciting move toward more research, data and solutions. We look forward to a brighter future!

 HHS Sickle Cell Disease (SCD) Summit 

Empowered & Thriving SCD Warriors & Communities 

The Department of Health and Human Service commemoration of Sickle Cell Awareness Month.

Objective: to connect the SCD community with new audiences around a shared vision of accelerating advancements in SCD care, research, and quality of life. …Hear from and interact with warriors, providers, faith-based leaders, politicians, influencers, and others.

This is a hybrid event. Can’t make it to D.C.? Scan the QR Code or Click the link below to register. Hurry, the deadline is getting closer!

Click to Register for Inaugural Summit

September 24, 2024 9:30 AM – 5:00 PM ET 

Can those needles relieve pain, really?!

They sure can

The Grace Study wants to know how well acupuncture can relieve your pain. (This ancient Chinese therapy has been used to relieve pain since days of old.) How well your pain is relieved, is unique to you. In general, the pain relieving capacity of acupuncture increases during the period of active use.

The Grace Study is one of only two studies in the country recruiting persons with Sickle Cell Anemia to study the benefits of acupuncture for pain relief. If you are assigned to an acupuncture group, you will receive 10 free sessions. This can be an addition to your pain regimen and will not compete with or prevent you from receiving adequate care.

Your participation aids the study of pain therapies for people with Sickle Cell.

See the flyer below for details and contact information

ISAAC, 7th Annual Chicago Sickle Cell Summit

Attend this informative summit for patients, caregivers and providers, virtually on Zoom.

Keynote speaker: Lakashamanan Krishnamurti, M.D. Chief, Pediatric Hematology and Oncology, Harvard University

Register below, download flyer. Click here to: Register for the ISAAC Chicago Summit or scan the QR code on flyer.

SCDAI, down under...

further away from Chicago?

Attend our partner Walk for Sickle Cell downstate, in

ALTON ILLINOIS ll

Register at: www.apreciousorganization.org

Walk, Jog or Run, for Fun and Funds

Its Time to Raise Sickle Cell Awareness 1 Mile at a Time!

Please Join us!

Saturday September 28th, 2024 10:00 am - 1:00pm

Checkin Begins at 9:00 AM

Click here to Register or Sponsor

Walk, jog or run for fun and funds.

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.

GroupMe App Sickle Cell Support Groups

Chat & Text Support Group

• Caregiver Support Group for parents of individuals with Sickle Cell Disease.Click to Join

• Adult Support Group for individuals with Sickle Cell Disease that are 18 & Over. Click to Join