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February's a short month - but for Sick Cells it was full of love, history, and rare disease advocates. We were also pretty busy on social media this month, but we're excited to get out and meet new faces soon! 

Below, we'll be recapping our Black History Month Series and Founder's Week for your reading pleasure. We'll share some highlights from Rare Disease Week, and how you can get involved with NORD's Rare Disease Days. We'll also have some News You Can Use, but first...

A Minute With Marqus

From Black History Month to his new specialty shoes, Marqus had a lot to celebrate this February. He kicked off Sick Cells' very first Founder's Week, but also overcame a few hardships due to the severe winter weather in Chicago.
This month, I had a few doctor's appointments scheduled, but due to the substantial amount of snow and ice that hit the city, they were canceled. I was unable to see my hematologist or my heart doctor. The roads were too bad for the staff to get back to the hospital.

I was in so much pain during the snowstorms and the pain intensified when the weather jumped from 20 degrees to 40, then back down. On top of that, I couldn't get to the hospital for any medication or treatments. To treat my pain at home, I used warm blankets, my oral medications, meditation, and video games. Distraction always helps me.
Marqus, Dan Holly (Sick Cells' web designer), and Marqus' friends filming for Founder's Week. 

But on a brighter note, I was able to get a pair of prescription shoes. I haven't worn regular shoes since 2013, so to get a pair of shoes that I can easily slide my foot in and out of has been awesome. I got these shoes because of the leg ulcers. The leg wounds caused my foot to reshape a bit. 

The doctors took precise measurements of my feet and they were able to build a shoe that fits around my foot perfectly. The entire front part of my shoe is velcro, so I can pull the entire front part up and it makes it easier for me to slip my foot in and out. When the weather clears up, I'll be strutting around town in my new shoes!

Sick Cells Does Rare Disease Day!

Today, Sick Cells is in Springfield, Illinois for Rare Action Network's Rare Disease Day! Rare Action network is powered by the National Organization of Rare Disorders (NORD) and they're hosting Rare Disease Day across the country.

Sick Cells will join patients, families, caregivers, medical professionals and industry representatives to educate state legislators and their staff about rare diseases and the challenges patients and their families face in the state. 

Although your state's Rare Disease Day may have passed, there are still opportunities to
get involved
Alabama, Arkansas, Hawaii, Michigan, Nebraska, New Hampshire, New Jersey, New York, Oklahoma, and Texas
 
Do you live in one of these states? Then your official Rare Disease Day has not passed. Visit the Rare Disease Day website for more information on your state's specific event and how you can lobby for the 1 in 10 Americans affected by a rare disease!

Rare Disease Week is Also Underway
(February 26 - March 1)

Every year, the U.S. observes the last day of February as Rare Disease Day. During the week, multiple rare disease organizations celebrate rare diseases by educating each other on unique rare diseases, learning about rare disease legislative issues, and sharing their stories with policymakers.

Nearly one out of every 10 Americans live with a rare disease. In Washington, DC, the EveryLife Foundation brought together over 500 rare disease advocates to lobby for rare diseases on the hill.

This year, over 30 sickle cell advocates traveled to DC for these events. Sickle cell had representatives from MN, FL, AL, OH, DC, CA, IL, KS, MO, TN, PA, KY, and MI. The advocates were ready to lobby for the sickle cell disease bill, 
HR2410 - Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act, but it passed to the Senate overnight, for the first time since being introduced, on February 26th. The advocates lobbied for a Senate companion version of the bill and other rare disease legislation. 

Tune into Senator Cory Booker's Facebook page today at 4:00PM EST to see his round table discussion about SCD and the Senate companion bill.

Sickle cell advocates prepare each other for the lobby day in the Ronald Reagan Building between sessions. 
(Left to right) SCD advocate Dominique Goodson, FA advocate Kyle Bryant, and Sick Cells' Co-Founder Ashley Valentine 
Legislation aside, the special moments of Rare Disease Week really glimmered when all rare disease advocates realized they had something in common with each other. On Sunday evening, the EveryLife Foundation aired the documentary, the Ataxian, a film about Kyle Bryant, a rare disease advocate who lives with Friedreich's ataxia (FA).
 
The FA community has a slogan that rings true in all rare disease communities, "working alone, we accomplish little. Working together, there's very little we can not accomplish." That was the sentiment throughout the conference in Washington, D.C. 

Keep an eye out for Sick Cells' Rare Disease Week email recap in March. We learned so much, met so many resilient and supportive people, and cannot wait to share more from this incredible experience. 

Marqus, Shirley, and the FDA

Marqus, along with another sickle cell patient and advocate, Shirley, were given a platform to represent sickle cell in this Rare Disease Week video presented by the FDA. The two together emphasize the importance of the research and development of FDA approved treatments for rare diseases, specifically sickle cell disease. Visit this link to watch more videos from rare disease patients and advocates. 
Marqus and Shirley share their personal experiences with sickle cell disease

Black History Month Recap

During Black History Month 2018, Sick Cells honored #FacesOfSCD that have moved the community forward throughout history. We hope you enjoyed the stories we shared across our social channels. The stories are available on our website, so we can continue to increase awareness on the history of sickle cell disease. 

Founder's Week Recap

We spent one week in February introducing members of the Sick Cells team on our Instagram. From Marqus to our Chief Financial Officer, Adrian, we're grateful for all the love and support we received throughout the week.

Check out some of the kind comments we received from our awesome followers!

News You Can Use

Why don't you hear more about sickle cell?: Listen to Marqus Valentine discuss his life with sickle cell. 

Make-A-Wish helps a 14-year-old girl publish book: Timberly White’s wish was to create a book because she wants other children with sickle cell disease to know they aren’t alone.

The Black Panther Party and sickle cell: Free Health Clinics, Sickle Cell Testing, Acupuncture – Learn about how the Black Panther Party advocated for those with sickle cell. 

Hospital Playroom Transformed Into Romantic Restaurant For Parents Of Kids With Bone Marrow Transplants: "Tatiana, who received a bone marrow transplant for sickle cell anemia, has been in the hospital more than 100 days, taking the family away from their home in Hampton, Va."
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