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Springing Into Some Updates! 🌼

Spring is finally here and we're in full bloom. March was an exciting month for Sick Cells. From new awards to some media coverage, Sick Cells is staying busy.

This month, we'll recap Rare Disease Week — specifically policy updates —spotlight SCD advocate Rahn, and highlight Sick Cells in the news. We'll have some News You Can Use, but first...

A Minute With Marqus

Marqus and Ashley were selected as the 2019 Red Cross Heroes for Blood Services. Amidst celebration, Marqus' sickle cell disease took a nasty turn and landed him in the hospital for a crisis and acute chest. 
Marqus in Washington, DC during Rare Disease Week 2019
A hero. That's a title I never thought would apply to me. Ashley and I were selected for the 2019 American Red Cross Blood Services Heroes. I think of my friends who have passed on and the ones who live every day pushing to maintain their health. I'm so honored to be given the title of "hero" and share their stories of perseverance despite the odds of sickle cell disease.

I have been floating on cloud nine for a month since we heard the announcement. I was scheduled to do an interview and even return back to DC, but I started feeling crummy this week. I tried my best to hydrate at home, rest, get massages, and take all of my medications; however, I went into sickle crisis on March 26 and developed acute chest on March 27.


Acute chest is very painful. It feels like an elephant is sitting on my chest. On March 26, the pain was so unbearable that I was gasping for air which caused my saturation to drop. My night nurse took good care of me and ended up calling the rapid response team (RRT) because my oxygen level was dropping and I couldn't breath in.
Marqus uses a nebulizer treatment with a mask to open his lungs.
On March 27, during the nighttime, I developed a high fever. High fevers in people with SCD always require medical attention. The night team took blood cultures, repeated my chest x-ray, and began treating me with antibiotics for pnemonia. My chest x-ray showed white spots on my lungs, called infiltrates, that identify an infection.  

After consultation with my specialist, my treatment plan is to take nebulizer treatments to relax and open my airways. I use an incentive spirometer hourly to help keep my lungs inflated. I am receiving blood transfusions for my low hemoglobin, and continuous fluids because I was dehydrated.

I'm very grateful to have a quick response from my medical team and a supportive family who haven't left the hospital since I was admitted. My goal now, is to get healthy so I can walk across the stage with my sister to accept my Red Cross Hero award.  

Rare Disease Week: Policy Updates

More than 30 SCD advocates went to Capitol Hill for Rare Disease Week and various SCD advocated at the state level. This month, we'll recap the legislation discussed on the Hill and what the community can do now to stay engaged. 
SCD advocate, Doris, lobbying at the state capitol in Albany, New York. There she testified in favor of increased funding for state SCD programs. 

SCD Federal Legislative Ask

Rare Disease Week is over, but it's still important to stay in contact with our elected officials to make sure the legislation we lobbied for stays top-of-mind. 

The Ask 

The Sickle Cell Treatment Act of 2018 (P.L. 115-327) authorizes funding toward SCD data collection grants to states, academic institutions, and nonprofit organizations to gather information on the prevalence of SCD and the health outcomes, complications, and treatment of SCD.

The next step is to request that the authorized funding is
appropriated  in the 2020 budget to provide dedicated funding for the sickle cell disease surveillance, outreach, and education programs to the Centers for Disease Control and Prevention (CDC) Blood Disorders Division, within the National Center on Birth Defects and Developmental Disabilities

What is the difference between authorization and appropriation of a bill?
"Authorization" is Congress saying that money can be spent on a given item - not that it necessarily will be spent on the item.  "Appropriations" allow Congress to spend the money that had been previously authorized.

What does this mean for the SCD Legislation?
The Sickle Cell Treatment Act of 2018 has authorized funding. Now, the community needs to work with legislators to secure or "appropriate" the funding that we requested. To learn more about the process, check out the hyperlinks. 
SCD advocates from IL visited the state capitol in Springfield, to discuss the Illinois Report Card on healthcare. 

Sickle Cell Disease Federal Legislative Asks

Ask 1: Co-Sponsor Reauthorization of the Newborn Screening Saves Lives Act.

Ask 2:  Support Robust Funding for the National Institutes of Health and the Food and Drug Administration.

Ask 3:
Join the Rare Disease Congressional Caucus


The Rare Disease Caucus is a bipartisan, bicameral caucus that works to raise awareness of rare diseases. Co-Chair Representative G.K Butterfield (NC) and caucus member Rep. Butterfield co-sponsored HR2410 The Sickle Cell Treatment Act of 2017-2018.

Sick Cells in the News

Sick Cells had some news coverage this month. The team was featured in blogs, podcasts, and even did a photo shoot with the Red Cross. 

Red Cross Heroes

This year's Red Cross Heroes, Ashley and Marqus Valentine
Each year, the American Red Cross of Chicago & Northern Illinois honors individuals and groups for acts of great bravery, dedication and service to the community at its Heroes Breakfast. We're proud to announce Ashley and Marqus will be honored as this year's Blood Services Heroes at this year's event. If you're interested in attending, you can purchase tickets here.

Global Genes Features Sick Cells and Friends

Global Genes sat down with Sick Cells co-founder and president, Ashley Valentine, for a Q&A focusing on how she became involved in the rare disease community. Read the full interview here.

Marqus and SCD patient and advocate, Doris, were also featured on Global Gene's RARECast. Listen to, "How Misperceptions Can Create Barriers to Care"
here.

Spotlight Interview: Rahn

Sick Cells met Rahn at Rare Disease Week (RDW) 2019 in Washington, DC. He radiated positivity and was full of contagious energy. We reconnected with Rahn to discuss his experience at RDW. 
Rahn and other SCD advocates at Rare Disease Week in Washington DC
Sick CellsWhat did you learn at Rare Disease Week 2019?

Rahn
Being my first time attending Rare Disease Week, I learned a lot about other illnesses, diseases, and a plethora of information about legislation, and the legislative process when it comes to getting funding for research, treatments and raising awareness.

Sick CellsWhat gave you hope at Rare Disease Week 2019?

Rahn: What inspired me tremendously, and also gave me the most hope was meeting so many individuals living with sickle cell disease. As strange as this sounds, knowing you're not the only one battling this invisible monster on the daily is oddly comforting. Especially knowing that I can reach out to other advocates and ask about their past experiences or any other questions that a healthy person just might not understand the same. 
Rahn met several Congress members from his home state, Florida, on the RDW lobby day. 
Sick CellsYou came all the way from Florida to DC to attend the conference. What motivated you to attend?

Rahn
What motivated me to travel from Florida to DC alone was the opportunity to voice my opinion and make an impact pertaining to sickle cell, as well as addressing a lot of the stigmas that affect many sickle cell patients, treatment, and care. Secondly, to prove to my baby sister, Rionna, who also has sickle cell, that we can achieve whatever we put our mind to despite the drawbacks of our illness. 

Sick CellsAre you looking forward to coming back next year?

Rahn: I am ecstatic and most definitely looking forward to coming back next year. My goal next year is to invite more males that I know to participate because not many were present and their opinions, experiences, and voices need to be heard as well. 

Sick Cells and the Gen S Family! 

Sick Cells is a proud partner of Novartis' Generation S Campaign. Gen S shares real-life stories of challenge, hope, and inspiration from people in the sickle cell community.

Thank you, Jordin Sparks for sharing your story as part of Generation S with Novartis. Watch Jordin's video here. You can share your story too. Visit the Gen S site here.

 
Jordin Sparks shares her story with Gen S

Thank You for Your Donations

If you'd like to support us as we continue to elevate the voices of the sickle cell community, donate today! 
DONATE

Upcoming 2019 Conferences

Sickle Cell Thalassemia Patients Network (SCTPN) 26th Annual Dinner Dance and Lifetime Achievements Gala. April 6. Where the community comes together to recognize the medical professionals & community resources that serve the Sickle Cell Community. 

National Sickle Cell Advocacy Day. April 8-9. Sickle Cell Disease Association of America (SCDAA) will host its 2019 Annual Advocacy Day event on Capitol Hill in Washington, DC. 

National Hispanic Medical Association (NHMA). April 11-14. Call for abstracts for the 23rd Annual NHMA Conference.

HealtheVoices. April 12-14. A groundbreaking leadership conference created exclusively for those using social platforms to advocate for themselves and their communities.

FDA Meeting on Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities. April 29. This public meeting is to obtain patients’ and caregivers’ perspectives on impacts of rare diseases on daily life.

Mental Health America. June 13-15. Each year, MHA's Annual Conference brings together affiliates, consumers, providers, family members and advocates from across the country to talk about important and emerging mental health issues.

RARE Patient Advocacy Summit. September 18-20. The RARE Patient Advocacy Summit is an opportunity to forge meaningful connections with other rare advocates and take home actionable strategies and tools to accelerate change.
Do you have any walks or talks you'd like Sick Cells to include in our monthly newsletter? Please send details to avassall@sickcells.org. Please note: Sick Cells sends our newsletter out the last weekday of each month. 

News You Can Use

Sick Cells and SCDAI's Therapeutic Riding Day: SCDAI teamed up with Sick Cells and Bravehearts for its first annual sickle cell therapeutic riding day. If you are in IL and interested in attending, visit here. 

SCDAA's Annual National Convention - Call for Abstracts: If you are you a researcher, community-based member organization, physician, nurse, social worker or someone working on behalf of people with sickle cell disease and their families, Sickle Cell Disease Association of America, Inc. would like to highlight your work at the 47th Annual National Convention

CBS's 60 Minutes Features Gene Therapy for Sickle Cell: An NIH clinical trial is ushering in a genetic revolution as an innovative type of gene therapy is used to attempt to cure sickle cell anemia. Dr. Jon LaPook reports

5 Steps to Becoming A Rare Disease Parent Advocate: To advocate for your rare disease community does not mean taking on every aspect of change that needs to be made. Advocating in the rare disease space simply means “putting in the effort to create lasting change.”  
Copyright © 2019 Sick Cells, All rights reserved.

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