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Happy Spring, Sick Cells family! Big news - we're now officially online as www.sickcells.org. Yes, we've made the switch from .com to .org, and our emails have changed as well. Please make note of this change wherever you have us stored, so we can stay connected!

April was full of planning as we gear up for a busy summer 2018. With warmer days ahead of us, we're ready to meet more #FacesOfSCD. This month, we're also giving our readers a chance to be featured on our social channels, recapping our April #TakeoverTuesday, and keeping you up to date on policy. We have our usual News You Can Use, but first...

 

A Minute With Marqus

Marqus shares how his service dog impacts his life. He recounts an event when the dog sensed a severe sickle cell crisis and came to Marqus' aid.  
Marqus trains his service dog, Chewy, while he waits for a doctor's appointment. 
Meet Chewy. Chewy is my service-dog-in-training. His job is to be a brace and mobility support dog. This means that he’ll carry my oxygen batteries around, help me stand up so I don’t need a cane, and he’ll be able to pull me in a wheelchair when necessary. Studies have shown that animals lower stress. Me personally, having a pet around distracts me from pain, and in multiple instances, our dogs have saved my life.
During Marqus' six week hospitalization for sepsis, Chewy came to visit. 

In 2015, I had the worst sickle cell crisis in my life and spent the entire summer hospitalized. The crisis was caused by sepsis, a dangerous bloodstream infection. It sneaks up on you without much warning. The night of the crisis, I had fallen asleep downstairs. Chewy woke me up in the middle of the night. He kept poking me in the face and wouldn’t let me fall back asleep. I decided to go upstairs to my room.

As I was walking up the stairs, Chewy was acting odd. He followed me so closely that he was bumping my legs with every step I took. I didn't think anything of it and went to my room. I was feeling extra tired but didn't have any pain or any other indicators that something was wrong. 

Marqus training his service dog, Chewy, at their weekly lesson.

I put up the dog gate to lock him out of my room. Suddenly Chewing started barking at the gate. This was odd for him because he’s a quiet dog. I thought he wanted to play, so I ignored the barking and laid down. Minutes after I laid down, Chewy’s barking got more hysterical. He was howling, clawing at the gate, and pacing in circles. When I sat up to see what was wrong, my pain went from 0 to 100.

The pain was so intense, my vision blurred, and I couldn’t breath. I tried to stand for help and went unconscious before fully being able to call for help. Chewy raced to wake everyone up. He tore covers off of my parents and broke the dog gate so they could swiftly get to me.

I'm so thankful for this dog. I truly believe he saved my life. Had I been alone downstairs, I could have gone unconsciousness for hours before anyone found me. Since then, I’ve made a full recovery and attend weekly dog training classes with my canine pal. He came to my aid during the most precious minutes of need.

National Nurses Week

(left) Santina, NP from University Hospitals in Cleveland, OH. She shared what she wants to see in the care for sickle cell disease patients. See her story here. 
Each year we recognize the crucial roles nurses play in the overall health of this nation. Starting May 6, we will spend one week spotlighting nurses that go above and beyond to take care of those living with sickle cell disease for National Nurses Week. Please make sure to follow our Instagram and Facebook to see the full stories.

Submit Your Pictures!

This year we also want to feature you all! If you or someone you know has pictures with a nurse that's impacted your life in a positive way, we'd love to share those pictures on our social media channels as well. Please submit all pictures and brief description of the picture to avassall@sickcells.org by May 4. 

Mother's Day is also quickly approaching! This Mother's Day, we're asking you share pictures of your mother with us to post on our Facebook and Instagram. Whether your mother is a caregiver or sickle cell warrior, we want the spotlight to be on all moms this May 13! Please submit all pictures and brief description of the picture to avassall@sickcells.org by May 10.

By submitting pictures, you are giving us permission to post the photos(s) across all of our platforms -- please make sure all those pictured are comfortable with this. 

Thank You Latrice!

We were happy to bring back our Instagram #TakeoverTuesdays this month with the beautiful, Latrice. Thank you to everyone who showed loved and sent such encouraging and kind comments. We cannot wait to feature our next sickle cell warrior.

In the meantime, look out for our weekly Minute With Marqus posts. Each Friday, we post a picture of Marqus with a short update, so our readers don't have to wait a whole month to hear from him! Marqus loves sharing his day-to-day life with the community, so thank you for your support thus far. 

Save the Date - Wiggin' Out!

By popular demand, we're bringing back Wiggin' Out for Sickle Cell! Last July we gathered at the Dirty Goose in Washington D.C. for a fun-filled evening of raffles, fashion shows, drinks and good company. With so much success last year, we had no choice but to bring the event back this July 14!

Keep an eye out for more details as our team works hard to put together an even better event this year. And no worries, our favorite fashion designer,
Tristan Lee, will be back to celebrate with us! 
Tristan and Renny Vonne at Sick Cells' first annual Wiggin' Out for Sickle Cell event in 2017.

We're Still Marching on Policy! 

Last month, we covered a lot of policy. We want to keep you informed, so in the coming months, we will provide updates from Capitols across the nation, and continue to share ways to get involved. One of our favorite sayings is, "If you don't have a seat at the table, you're on the menu!" - so this is our way of sharing what we hear with you.
NORD's Rare Action Network Advocacy Workshop Luncheon
On April 11th, Rare Action Network, powered by the National Organization for Rare Disorders (NORD) hosted a advocacy workshop luncheon for rare disease advocates. Sick Cells Co-Founder, Marqus Valentine, attended. The purpose of the luncheon was to give attendees the chance to learn about NORD's opportunities and connect with other patient organizations, leaders, and advocates.

For more events like this in your area, visit's
NORD's website and follow Sick Cells' social media pages for announcements. 
Marqus, and other rare disease advocates, at the 2018 NORD Advocacy Workshops in Chicago this April!
Good News: House Bill 4146 Passed to IL Senate
Last month we announced that we joined the Illinois Fair Care Coalition, led by the US Pain Foundation. If you've been following us on Twitter, you may have noticed all of our tweets using the hashtag #DontSwitchMe. Social media has been an effective way to inform and build support for HB 4146, so Illinoisans can be protected from unfair coverage reductions during the health policy year. We're proud to announce that #HB4146 has passed out of the IL House of Representatives, 71-27!

Visit our Twitter to follow the latest updates as the bill moves to the IL Senate. Thank you to all who've supported this bill thus far!

Interested in helping this bill come to fruition? Follow @FairCareIL on Twitter and use the hashtag #DontSwitchMe!
We Haven't Forgotten: Sickle Cell Legislation in the Senate
On February 26, H.R.2410 - Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2017 - passed to the Senate during Rare Disease Week. The advocates in DC celebrated during breakfast. See the Sickle Cell Disease Association of America (SCDAA) press release here.

On February 28, 2018, U.S. Senators Cory Booker (D-NJ) and Tim Scott (R-SC) introduced a companion bill to the Senate, called S.2465 - Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018. The bill is currently in the hands of the HELP Committee. 

The legislation aims to improve health outcomes for people with sickle cell disease. The bill does the following:
  • Reauthorizes SCD prevention and treatment grants awarded by the Health Resources and Service Administration (HRSA) 
  • Authorizes the Centers for Disease Control and Prevention (CDC) to award SCD surveillance grants to states, academic institutions, and non-profit organizations 
  • Enhance the understanding of the prevalence and distribution of sickle cell disease and its associated health outcomes, complications, and treatments.  
For more information, you can visit Sen. Booker's site here
S.2465 and HR2410 are now in the hands of the Senate HELP Committee. The HELP committee stands for the Health, Education, Labor & Pensions and began in 1869. The HELP committee is currently ran by 22 Senators, 12 Republican and 10 Democrats, who work together and have a large jurisdiction over the country's health care, employment, retirement and education policies.

While in the Committee, the bills will undergo any necessary changes (i.e., additional information from non-committee experts, comments from relevant executive agencies) and then sent back to the full Senate. Now is the time for the sickle cell community to actively advocate for the bills.

If you are from any of the states in the HELP committee, make sure you reach out to your Senators and offer to help them understand sickle cell disease and ask them to co-sponsor S.2465 and HR2410. We listed their names and hyperlinked them to their twitter accounts. Be sure to send them a tweet about the bills!

Sick Cells is working with various groups to create one-pagers and other educational materials on these bills! 
Michael B. Enzi (WY) 
Richard Burr (NC) 
Susan Collins (ME) 
Bill Cassidy, M.D. (LA)
Todd Young (IN)
Orrin Hatch (UT)
Pat Roberts (KS)
Tim Scott (SC)
Lisa Murkowski (AK)
Lamar Alexander (TN)
 
Bernie Sanders (VT)
Michael F. Bennet (CO)
Tammy Baldwin (WI)
Christopher S. Murphy (CT)
Elizabeth Warren (MA)
Tim Kaine (VA)
Maggie  Hassan (NH)
Doug Jones (AL)
Patty Murray (WA)

News You Can Use

Tiahna's South Africa Adventure: Sickle cell warrior, and one of Sick Cells' first Takeover Tuesday participants, explored South Africa with the help of Make-A-Wish Illinois.

Rare on the Road 2018: The EveryLife Foundation and Global Genes are excited to partner for RARE on the Road, a Rare Disease Leadership Tour to bring critical education and insights to rare disease patients, caregivers and other advocates.

PAINWeek 2018 is Coming: September 4-8, PAINWeek is the largest US pain conference for frontline clinicians with an interest in pain management.
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