September 2023 • Volume 3 | Support Our Mission - Donate to SCDAA

Important Convention Updates

Deadlines Are Rapidly Approaching!

Did you know that there are only TWO WEEKS LEFT to register to join us in person for the 51st Annual National Convention? It is also your LAST WEEKEND to book a room in our discounted hotel block. Don't miss these important cut offs - register today.

Session Highlight: Charles F. Whitten, M.D., Memorial Lecture

Explore the issue of health inequalities during this year’s Charles F. Whitten, M.D., Memorial Lecture "Leave No One Behind," presented by keynote speaker Vence Bonham, J.D., acting deputy director at the National Human Genome Research Institute.

Last Chance to Participate in Sickle Cell Awareness Month!

Featured Member Organization Event

Walk, Jog & Bike 5K

Sept. 23 | Chicago, IL

Get active and support the Sickle Cell Disease Association of Illinois during this fundraiser on Saturday!

Thank You for Joining Us for Walk with the Stars!

Last weekend, we enjoyed a sunny morning full of connection, joy and movement with our community in Baltimore. Thank you to everyone who supported this year's event. Whether you joined us in person or virtually, your contributions will help us move one step closer to a universal cure.

Announcing: The SCDAA and MedicAlert Pilot Program

Today, SCDAA launched a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with SCD. The goal of the pilot program is to improve access to timely, effective emergency care for people experiencing a sickle cell crisis. The program provides participants with a MedicAlert digital health profile to store their physician-approved pain plan, physician contact information and other vital health data. Each participant also receives a customized Smart Medical ID Card, which provides easy access to their health information and pain plan via a QR code. Learn more.

Resolution Recognizing SCD Awareness Month and SCDAA’s 50th Year Introduced in House of Representatives

On Sept. 18, 2023, long-time sickle cell disease (SCD) policy champions, Representatives Danny Davis (D-IL), Michael Burgess (R-TX), Barbara Lee (D-CA) and Buddy Carter (R-GA) introduced House Resolution 692 designating September 2023 as Sickle Cell Disease Awareness Month. The goal of the resolution is to educate communities across the US about the disease, the need for research, early detection and effective treatments.  

We are thrilled to announce that this bipartisan resolution highlights the work of SCDAA as it celebrates its 50th Anniversary. Of note, the resolution states:

“Resolved, That the House of Representatives—  

(1) recognizes the important work of the Sickle Cell Disease Association of America as it celebrates its 50th year in raising awareness of sickle cell disease, supporting patients and families with the disease and working toward finding a cure for this devastating disease.”

The full resolution can be found here. SCDAA appreciates and thanks these dedicated Members of the House of Representatives, who work diligently to improve the lives of people living with SCD.

Your Weekend Listens

Check out these podcast episodes featuring SCDAA President and CEO Regina Harfield!

Regina Harfield of the SCDAA - Cheat Codes: A Sickle Cell Podcast

Shining a Light on Sickle Cell Awareness with Regina Hartfield - Thrivin' In Color

New Fact Sheets: What to Know about Preconception, Prenatal and Postpartum Care

Learn more about how to stay healthy leading up to, during and after a pregnancy with these newly developed fact sheets from the Centers for Disease Control and Prevention (CDC), the Foundation for Women & Girls with Blood Disorders, the American Society of Hematology and the Sickle Cell Reproductive Health Education Directive.

This Week from oneSCDvoice.com

SCD warriors, caregivers, and advocates, please join us for a “Somebody To Talk To” session!

The sessions are free, and everyone is welcome and encouraged to participate!

Somebody To Talk To is a not-for-profit charitable organization dedicated to helping provide emotional / caregiving / parenting / relationship skills education, training and supportive group discussions to the entire rare disease community — one disease at a time. Somebody To Talk To’s mission is to provide free and impactful coping and life skills development and training to rare disease patients and caregivers experiencing potentially overwhelming circumstances so that they can take better care of themselves and their families. The sessions are free, but only last 30 minutes so please arrive a few minutes early. Learn more.

CHOICES: Online Research Study for People with Sickle Cell Disease or Trait

Is your decision to become a parent impacted by your sickle cell status? The CHOICES study is seeking participants to answer questions about their experience with sickle cell and share their plans and beliefs related to parenting choices during a two-year period. Compensation is available. Click here to see if you are eligible to participate. To learn more, email choices.study@health.ufl.edu.

Share Your Insights with the Academy of Managed Care Pharmacy

The Academy of Managed Care Pharmacy (AMCP) has dedicated programming in 2023 to inherited blood disorders, including sickle cell, and is surveying health centers specializing in sickle cell regarding unmet needs. The survey insights will help shape discussion among health plan formulary decision-makers on ways to optimize access to care, which will enhance the patient journey and ultimately improve outcomes. The survey can be found HERE and will take approximately 15 minutes to complete. The deadline to submit a response is Sept. 27.

Participate in an Online Survey on Impact of Monkeypox

Help clinicians at Cook County Hospital learn more about how monkeypox (MPox) affects both people living with sickle cell disease (SCD) and their family or friends without SCD by participating in a three-minute anonymous online survey. The purpose of the study is to determine if SCD predisposes individuals to severe Mpox symptoms. If you are interested or know someone who will be interested, please use this link to access the survey (available in both English and Spanish).

In-Person Paid Research Study on SCD and Birth Control

The Women’s Health Clinical Research Center at Penn Medicine is seeking participants with sickle cell disease for a study to see if they experience any difference in their sickle cell pain while using a hormonal birth control implant. The implant, known as Nexplanon, is FDA approved and the most effective form of hormonal contraception.

Participants must be able to complete four or five in-person visits in Philadelphia during the nine-month study. Eligible participants can receive up to $530 for completing all parts of the study. Click here to learn more and see if you are eligible.

2023 ASCAT Conference

October 25-28 | London, England

Save the date for the 2023 Annual Scientific Conference on Sickle Cell and Thalassemia! Learn about the latest advances in diagnosis, treatment and emerging therapies. Click here for more information.