Happy Holidays, News & Happenings From SCDAI. Be A Part of It

December 2024

Safety ALERT!

CDC Updates Investigation of Salmonella Outbreak in Cucumbers


Notice From CDC: December 5, 2024


Public health actions

Many companies have recalled cucumbers or foods made with them. CDC advises people not to eat and businesses not to sell or serve recalled cucumbers. FDA continues to work with additional importers that received cucumbers grown by Agrotato S.A. de C.V.



New as of 12/5: Additional companies have recalled whole fresh cucumbers or foods made with them, like salads or wraps. Check your homes for recalled cucumbers and do not eat them. Businesses should refer to each recall for bulk packaging information. CDC has also added a table of recalled products to the "Recalled Foods" section of the main outbreak page. Additional companies have recalled whole fresh cucumbers or foods made with them, like salads or wraps. Check your homes for recalled cucumbers and do not eat them. Businesses should refer to each recall for bulk packaging information. CDC has also added a table of recalled products to the "Recalled Foods" section of the main outbreak page.



Stay Well

Guess What? It’s Still Fall Until The Party ! (December 22nd)

Don’t Allow Cold & Flu Season to Ruin The Fun

Stay Up To Date on These Vaccines and Others

See Vaccine Schedules You Should Know About

Download child vaccines schedules and information

Download schedule and Info for children 7 -18 years of age

Download schedule and info for adults young adults to seniors

What’s Happening?

Have you registered for our Holiday Party? Adults and children with sickle cell disease, plus their caregiver or parent are invited to attend. December 22. 2024 from 5-8pm at Centennial Lanes 2.0 in Tinley Park, Il

Register

Catch UP! Links to Past Events & News

Did You Miss IT?


  • HHS Briefing of Provider Toolkit

Watch the Briefing on the Toolkit

  • OASH Housing Webinar

View OASH Housing Recording

  • Social Security Admin: Updates for persons with Sickle Cell Disease (see the article below)
  • CMS Provider Toolkit

Download CMS Toolkit Here

  • CMS Sickle Cell Disease Action Plan

Download Action Plan

CDC Toolkit For Sickle Cell Page

Making Disability Application Simpler

From Social Security Administration:

Simplifying the SSI process


We have important news to share with you about some changes to the Supplemental Security Income (SSI) program that will be effective September 30, 2024. These changes will simplify our processes and make things easier for everyone. 

  • Food: We are no longer counting food that someone gives you as income when we figure your SSI payment. 
  • Nationwide Expansion of Rental Subsidy: We are expanding the In-Kind Support and Maintenance rental subsidy exception nationwide which was previously limited to SSI applicants and recipients in 7 states. This change may apply to those related to the landlord or landlord’s spouse as parent or child. 
  • Revision of the Public Assistance Household Definition: We are expanding our definition of a public assistance household to include SNAP payments. A public assistance household will apply when the household has both an SSI applicant or recipient and one other household member who receives a public assistance payment.  

These changes simplify the rules and requirements of the SSI program. 


Center For Medicare and Medicaid Services collaborates with manufacturers of gene therapies Lefgenia and Casgevy, who have agreed to participate in the Cell and Gene Access Model. This model will assure access to transformative cell and gene therapies and lower cost of these therapies. This will ensure the availability of these therapies to persons with sickle cell who otherwise would not be available due to finances or insurance denials. This agreement is performance based and payments to the manufacturers will be dependent on outcomes of medicaid recipients who use their therapies.

CHAI (Clinton Health Actions Initiative) secures three-year, US$8 million grant from Open Philanthropy to tackle sickle cell disease


According to CHAI’s Executive Vice President of Infectious Diseases and Chief Science Officer Dr. David Ripin, “While the world is focused on an SCD cure through gene therapies, the reality is that hundreds of thousands of children born in low- and middle-income countries are dying every year because they don’t have access to basic diagnostic tests and affordable treatments.” Dr. Ripin went on to express Chai’s confidence in offsetting the unnecessary mortality of children with sickle cell disease under five years to surviving and managing their condition. Alarming statistics predict that 50-90 of children in Africa and underdeveloped countries without access to proper care, will die before the age of five years due to higher vulnerability to infections, anemia and to malaria. CHAI plans to include countries such as Ghana, India and Nigeria to strengthen their healthcare systems and ensure increased screening, enrollment and continuity of care, for children with sickle cell disease. See the article here.

Just For Us. Here is What’s Happening.

The Social Security Administration announces three new publications designed to support individuals with sickle cell disease and their caregivers. These include: 





Looking For You: Parents, Adults for Focus Groups, Studies

Focus Group Needs You at University of Chicago

This Bracelet Protects Your Health

Protect Yourself in an Emergency

Medic Alert


Your stylish bracelet has these advantages:


  • Get ready access to your health records in times of emergency.
  • Make your records and pain plan accessible wherever you go
  • Inform health care of your allergies,
  • medicines you can or cannot tolerate,
  • your past procedures


Don’t Let This Opportunity Pass You By to Be Part of the Pilot

Other health conditions have had the advantage of

Medic Alert for Decades.


Now Is Our Time

Click the link and SIGN UP TODAY!

https://www.medicalert.org/sicklecellpilot/

Don't Miss These Studies

You Can Still Sign Up for the Grace Study

Relieve your pain with Acupuncture

Relieving Pain with a Little Poke

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


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