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October Updates from Sick Cells 🍂

Fall's in full swing and so is Sick Cells! This month, our Faces of SCD campaign shared stories about going to school with sickle cell and how the season change impacts the sickle cell community's health. We'll also spotlight a family on how they manage sickle cell disease. Make sure to read more of the stories on our Instagram.

Sick Cells also said “hello” to Chicago, Cleveland, and Atlanta this month.  And happening now – Elijah Powell is taking over the Sick Cells Instagram handle. Follow us @sickcells to spend the day with him!

We'll share all the details with you and some news you can use, but first…

A Minute with Marqus

Nothing keeps a sickle cell warrior down. Marqus attended the Illinois Sickle Cell Conference and the Cleveland Sickle Cell*abration. Although October brought pain for Marqus, he was able to push through and even introduce a speaker at the Illinois Sickle Cell Conference.  
It was great attending the events this month. I missed the other summer walks, so I was happy to close out the year speaking with other sickle cell people like me. It also felt good to see so many familiar faces in Chicago. 

In Cleveland, I was happy to see a large turnout for the event and the participation by young adults. When I went through transition, I didn't know anyone with sickle cell disease, let alone have older SCD adults as mentors.  The Seidman Center sickle cell program has the older adults working with and mentoring the young people through transition.  There was a strong sense of community and support there. 

Alas, I still need a hip replacement. Traveling with this bum hip was challenging. At times it was really painful moving around, but I practiced meditation and focused breathing between movements. To stay mobile, we got a new walker with wheels until I can get my new hip.  

All in all, it was a great month. I look forward to sharing the stories from Cleveland!

Illinois Sickle Cell Conference

On October 6, the Sickle Cell Disease Association of Illinois (SCDAI) hosted their annual conference.  Sick Cells attended as a exhibitor, and Marqus moderated a talk.  This year, the conference highlighted how sharing knowledge and teamwork within the sickle cell community lead to solutions for issues like gaps in state funding for sickle cell disease. 
Co-Founders Marqus (left) and Ashley (right) Valentine at the Illinois Sickle Cell Conference. 
The conference opened with a panel discussion from Midwest and Heartland Region sickle cell leaders.  The group discussed best practices for obtaining state funding for their community-based organizations (CBOs). Gary Gibson, from Indiana, and Dr. Wanda Whitten-Shurney, from Michigan, explained details in their states' legislation that allotted dollars to sickle cell newborn screening, prevention, and care. 
In contrast, CBOs from Missouri, Minnesota, Illinois, and Wisconsin have yet to receive state funding for their programs and rely heavily on grants and donations.  The groups discussed action plans, best practices from Michigan and Indiana, and opportunities in state legislation to request for funding. The group also offered tool kits and resources to aid the other CBOs in neighboring states in the push to receive state funding for sickle cell. 

Many people with sickle cell disease rely on CBOs for community support and guidance for navigating the complexities of life with SCD. State funding for CBOs is important to ensure that the community can receive the care they need at the hospital level and at the community level.

University Hospitals Sickle Cell*Abration 

On October 14, University Hospitals Seidman Cancer Center's sickle cell program hosted a sickle cell remembrance ceremony. The event celebrated those living with sickle cell disease as well as honored the sickle cell warriors that have passed on. 
Singer-song writer Jessi Trice (left) and poet and photographer Leslyn Austin (right)  performed at the event.  Both ladies live with SCD. 
Music therapist and Sick Cells' Artistic Specialist Samuel Rodger-Melnick, aided in the planning of the ceremony. The hospital team invited sickle cell warriors to express through poetry, song, and spoken word, how they live their lives despite having sickle cell disease. 
Sickle cell warrior, Terrance Joseph, explains to Sick Cells' volunteer, Angelo Valentine, the inspiration for his nonprofit and hopes for sickle cell disease. 

SCDAA National Convention

October closed with the Sickle Cell Disease Association of America's national convention. This year, over 600 people attended. The vibe felt different and hopeful with a large presence from the pharmaceutical industry who are creating new, non-opioid therapies for sickle cell disease, local politicians from various states,and hundreds of SCD community members ranging from children to seniors. 

Sick Cells left the conference feeling inspired.  We've got work ahead of us to remove stigma and bring adequate policy and protections to the SCD community.  But the spirit in the SCD is strong and prepared for job. 
The SCDAA also hosted a game of Hollywood Stars. Sick Cells referred three participants to complete the nine sickle cell warriors who created the panel.  For many of the warriors on stage, their medical professionals warned them that they wouldn't live into adulthood. Today, they're all living and enjoying careers in government, medicine, clinical research, fashion, acting, and more.  

Don't Miss #TakeoverTuesdays!

Tune into the Sick Cells' Instagram for a day with Elijah Powell at Morehouse College. 

Spotlight Interview: Javon Ayers

In July, Sick Cells was delighted to meet Javon Ayers, a 15-year-old living with sickle cell hgb SS, and his mother Shakara. Sick Cells spotlighted Shakara and how she manages Javon's sickle cell disease and what advice she has for other parents.  
Sick Cells: How did you find out about sickle cell trait?

Shakara: When I gave birth to my son, I found that out. 

Sick Cells: How do you manage his sickle cell on a day-to-day basis as a mom?

Shakara: I have to just stay on top of him, make sure he takes his medicines, stays hydrated, and that's basically all I need. Just watch over him. He's still a teenage boy. He's going to have to go through life as is.
Sick Cells: How did you learn about sickle cell disease?

Shakara: It's been a day-to-day process. Normally from others. Nowadays we have social media, different internet stuff. I've learned a lot from the doctors, but still, everybody's different. You never know how somebody's going to react. I know all of his ins and outs. I know his triggers, like cold weather. Rain kind of sets off some things. 

Sick Cells: Has his sickle cell affected your work in the past? 

Shakara: Definitely. I was either always off from work or having to take off, call off, it was very [hard] making a decision. Do I pay the bills, do I go to work, or do I take him to the hospital because he's in pain? So it was one of those decisions. 

Sick Cells: What gives you hope for sickle cell disease?

Shakara: My son. I want him to be able to have a normal life. He's going to be 16 and start driving soon! He wants a normal life. We do as much as we can. You know, trial drugs and whatever it takes. If that will change it, we're on it. 
Sick Cells: What advice would you give to other moms that have children with sickle cell?

Shakara: Find other parents, that are going through the same thing as you are, as a team. Look out for telltale signs. When a child tells you they're in pain, they're in pain. Believe it, you know, don't always assume that they're trying to get out of trying to do something. But you'll be able to believe in your child; you'll be able to follow their signs.
Sick Cells' Very Own Sam Rodgers-Melnick: University Hospitals program uses music to teach about sickle cell.

New American Society of Hematology Guidelines: How they'll fill gaps in care for individuals with sickle cell disease

Obamacare sabotage in Florida: Alex is a licensed navigator for the Community Health Interventions and Sickle Cell Agency Inc.

Global Blood Therapeutics Announces Presentation of Case Study Demonstrating Positive Effect of Voxelotor (GBT 440) in Sickle Cell Disease Patient. 
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