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Happy New Year from Sick Cells! We're only one month into 2018, but we're already planning some big events for the year and can't wait to share them with you! 

This month, we'll introduce our Black History Month series, discuss Rare Disease Week on Capitol Hill, and preview our very first Founder's Week. We'll also have a spotlight interview and some News You Can Use, but first...

A Minute With Marqus

In 2014, Marqus sat on an FDA panel to discuss sickle cell, its complications, and the need for available therapies to treat the disease. Four years later and Marqus is excited to fill his very first prescription of Endari (L-glutamine oral powder), the first FDA approved treatment for adults with sickle cell in nearly 20 years and the first drug ever designed specifically for SCD. 

Back in 2014, I didn’t know much about L-glutamine and how it could be used in sickle cell patients, but I was excited to attend the FDA public hearing and knew this was our community's chance to finally get our voices heard. Three years later, in 2017, I testified at the FDA for Endari to come to market, and last week, I finally got my first prescription.

By speaking up and sharing my story throughout the years, I played a a role in getting Endari approved and available for those living with sickle cell disease. It's crazy what can be accomplished when the community comes together. I finally have my prescription. Endari is special because it's for us. It's for the warriors in this strong community.

Since 2014, I've realized it’s important for drug developers to continue starting with the people. We need more options. Old or new, not every treatment is for everyone. Yes, the voice of the patient is being heard, but we still need more options. It gives me hope that there will be more treatment options soon.  

Black History Month

February is Black History Month. Sick Cells will spend the month honoring Faces of Sickle Cell Disease that have helped elevate the community's voice throughout history. We hope you find the stories we share inspiring and informative.

We encourage our followers to engage with the #FacesOfSCD conversation, this month, by sharing their own history lessons in the comments of our posts or on their own personal pages using the hashtag #FacesOfSCD. 
[Stanford]
The Black Panther Party tests for sickle cell at the Black Community Survival Conference Rally in 1972

Sending Our Love in February 💌

Who do you love with sickle cell? ❤️  On February 14, 2018 we want our Twitter and Instagram followers to share the ones they love with sickle cell. Please submit pictures to be featured on our pages and a short description of who you chose and why you love them.

Send everything to to 
avassall@sickcells.com by February 12, 2018. Whether it be a friend, child, spouse, or nephew please help us spread the love this Valentine's Day. #ILoveSomeoneWithSickleCell 💌

Spotlight Interview: Leslyn Michele

Leslyn is a 26-year-old sickle cell warrior. She shared with us what she wished people knew about SCD and what gives her hope, including some loving words about her supportive mother!
Sick Cells: What's one thing you wish people knew about sickle cell?

Leslyn: That it's a lifelong disease that we're born with, and that it's something that affects our lives every single day. It affects our family members, because our family members have to suffer and watch us be in pain.

I never really realized until I moved out how special my mom is to me, because she actually chose to deal with a sick kid. Not everyone is strong enough to deal with that. I called her crying one day. Like, "Mom, I really thank you. You've been there for me my whole life". That's my best friend, you know? She understands.

Sick Cells: Sickle cell moms are so special.

Leslyn: Yeah. I didn't think about it, how hard it could be for my mom to actually have a sick child, versus me just having the disease. It affects the people around us too. I would want people to know that. It's not just us. It's an everyday struggle from birth. 

What people don't know about sickle cell is that our lives revolve around the disease. That disease determines what we do. It's always in the back of your mind, you might get sick. To have to live like that. It's like taking care of a baby, having sickle cell, and I don't even have kids.
Sick Cells: What gives you hope for sickle cell disease?

Leslyn: My documentary. I want to encourage, you know what I mean? Because like, "Oh, I'm sick. I can't do this. I can't do that". When they're in too much pain to walk. Let me be the one to speak out. Let me be the one to encourage people. That's my passion. I want to advocate, travel the world, inform and educate those who don't have the disease on the disease.

You might have the trait. Make sure you get tested. You never know. Because you have a baby with sickle cell and it's like, "Oh sh*t. What's sickle cell? We don't know how to take care of this baby". But if you had the knowledge of it then you could have been like, "if we do have a kid, now we know what we have at risk. Or maybe we shouldn't have a child". You guys can make that decision. 

But not a lot of people even know what sickle cell is. A lot of our people don't know what sickle cell is, and that's what's frustrating. That's why I want to wake everybody up like. Learn now and do what you've got to do to take care of yourself. Eat right, and [don't] stress, and take care of yourself. 

See You on the Hill!

Mark your calendars for Rare Disease Week February 25th - March 1st in Washington, DC. For a disease to be considered a rare disease, it must impact 200,000 or less people. Sickle cell affect approximately 100,000 people in the US; however, sickle cell is one of the largest rare disease populations and the most common genetic disorder in the world.

The EveryLife Foundation brings multiple rare disease community members across the country together to to Washington, DC to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. If you’re interested in attending Rare Disease Week and meeting legislators from your State at the Capitol, you can register online. The Legislative Conference is on Monday, February 26th and Lobby Day is on February 27th. All events are free.

The sickle cell community has a lot to educate legislators about this year. Some major topics include the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2017, the impacts of the opioid crisis on the sickle cell community, and access issues, like step therapy, for current and new medications for SCD. We’ll provide more updates as the events approach. Hope to see you there!

 
Rare Disease Legislative Advocates

Allow Us to Introduce Ourselves...

Starting on February 11, Sick Cells will host its very first Founder's Week! We want to share the history of Sick Cells and why February is important to our organization. We'll also be introducing our followers to the talented and dedicated team behind all the hard work that makes Sick Cells what it is today. Make sure to follow us on Facebook and Instagram before February 11 to capture all of the week's new and fun content! 

News You Can Use

Emmaus Life Sciences Announces Medicaid Coverage of Endari: Emmaus Life Sciences announced today that it has a Medicaid Drug Rebate Agreement with the Centers for Medicare & Medicaid Services allowing coverage of Endari (L-glutamine oral powder) to reduce the acute complications of sickle cell disease in adult and pediatric patients five years of age and older.

US Bioservices now dispenses Endari: Endari (L-glutamine oral powder) is a prescription medication by Emmaus Medical used to reduce severe complications of sickle cell disease in patients age five and older. 
 
Sickle cell patients face a ‘fight for everything’ — even attention: Sick Cells Co-Founder, Marqus Valentine, and family featured on USA Today.

FDA Grants Breakthrough Therapy Designation to Voxelotor: Global Blood Therapeutics believes that the ability to repair hemoglobin function and improve oxygen delivery makes voxelotor a potential disease-modifying therapy in SCA.
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