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When it rains...

As the saying goes, "when it rains, it pours" and this month it's pouring with conferences, summits, and sickle cell advocates at work. April's showers have Sick Cells in full bloom.

This month, we'll highlight the Red Cross Heroes reception, share policy updates and recap some of the meetings SCD advocates attended. Our #FacesOfSCD photo series is running again, and we'll even include some News You Can Use, but first...

A Minute With Marqus

This month started with Marqus in the hospital after a sickle cell crisis and finishes with him getting ready to be honored at this year’s Red Cross Heroes Breakfast.
Marqus spends time in the sun after being hospitalized for three weeks.

I was very sick this month and consequently spent three weeks in the hospital. I had acute chest and a sickle crisis. During the second week at the hospital, I was transferred to the intensive care unit (ICU) because my fever stayed above 101.5 degrees, and I couldn't breathe without a lot of oxygen. I needed more one-on-one care.

Although sickle cell is unpredictable, I was determined to get out of the hospital to make it to the Red Cross Heroes awards reception. I moved back to the regular hospital floor for a few days and was discharged the day before the event.

Marqus' care team uses home health to continue his recovery after discharge.  

This was a long hospitalization; however, I haven't been admitted to the hospital for a sickle cell crisis in more than two years. It has taken a lot of time to get back into our routine. I’m not used to stopping all of my work related to Sick Cells or being stuck in a hospital room getting so many pain medications that entire days are a haze. Apart from my walks around the floor, I stayed in bed for three weeks. 

Gratefully, at the reception, I was able to sit in a chair and meet people. It was special because Ashley and I spoke to other guests about the importance of blood donations. While I was sick, I received more than eight units of blood through simple transfusions and an apheresis blood exchange. It reinforced the importance of blood donation for many of the attendees.

Although I'm still in recovery mode at home, I'm happy to have a strong care team, my family support, and to receive an honor from the Red Cross - an organization that promotes life-saving blood donations.

Red Cross Heroes Reception

Tomorrow, May 1, Ashley and Marqus will be awarded the Blood Services Hero award in Chicago at the Red Cross Heroes Breakfast for their incredible work with Sick Cells.

On April 11, the Valentines attended the Red Cross Heroes reception where they met the other heroes and the 
American Red Cross of Chicago & Northern Illinois staff. 
Ashley and Marqus stand among other 2019 Hero Award recipients. Marqus was discharged from a 3-week hospitalization the day prior. 
Ashley and Marqus will be honored with the Blood Service Heroes award on May 1 in Chicago.

Thank You for Your Donations

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April Meeting Minutes

In April, SCD advocates attended several meetings to represent the patient voice. We recapped some of the meetings below. 
  • National Minority Quality Forum: The NMQF hosted a summit on April 8 and 9 in Washington, DC. The focus of the summit was diversifying the healthcare continuum for various conditions, like sickle cell disease. Panels discussed programs to include more minority voices in research and legislation, like the MOMMA Act to reduce mortality among Black mothers during child birth. 
  • World Orphan Drug Congress USA: The WODC was hosted from April 10 to 12 in Oxon Hill, MD. The meeting focused on the patient role in defining good healthcare and the establishment of a global rare disease policy and action plan. 
  • National Academy of Science Engineering and Medicine: On April 16, the National Academies hosted a panel, "Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action." Sickle cell advocate and Sick Cells Board member, Adrienne Shapiro presented. The next meeting will take place on June 3 and 4 in Washington DC.
SCD advocate and Sick Cells board member, Adrienne Shapiro, poses for a picture at the World Orphan Drug Congress in April.
SCD advocate, Dominique, poses for a picture at the World Orphan Drug Congress in April.

Policy Corner: SCDAA Lobby Day 2019

On April 9, more than 100 SCD advocates went to Capitol Hill to advocate for funding for SCD. The advocates educated Congress about the following topics:
  • Senators Booker's and Scott's offices request $3 million in appropriations to fund the CDC Surveillance program and $4.5 million to fund the HRSA Demonstration Act. 
  • The need to reauthorize the Newborn Screening Saves Lives Act.
  • The importance of robust funding for the NIH and FDA.
For more information, visit the Sickle Cell Disease Association of America's website. 
Sickle cell advocates from across the country meet on Capitol Hill for the SCDAA's official lobby day.

The #FacesOfSCD Photo Series

We're happy to announce our Faces of SCD storytelling program is back in full swing. Over the next several months, we'll highlight stories from Memphis and New York City.  We'll be back on the road to collect more stories this fall! 
Follow Sick Cells on Facebook and Instagram for the most recent stories. Visit www.sickcells.org for all stories.

Upcoming 2019 Conferences

RDLA Legislative Webinar and In-Person Meeting. May 9. Once a month RDLA convenes in person and over the phone to discuss legislation and developments that affect the rare disease community. Register here.

Academy Health - 2019 Annual Research Meeting. June 2-4. Join an audience from around the world working to improve health and healthcare at the 2019 Annual Research Meeting (ARM) in Washington, D.C.

The Foundation for Sickle Cell Disease Research (FSCDR) - 13th Annual Sickle Cell Disease Research and Educational Symposium. June 7-9. Watch last year's recap here

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.

EveryLife Foundation for Rare Diseases - 11th Annual Scientific Workshop. September 5. This year's topic will be, "Science of Small Trials in the Age of Biological Plausibility"

Annual Sickle Cell Disease Therapeutics Conference. September 10. A forum to discuss the latest advancements and future trends for treating patients with sickle cell disease.
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

SCD volunteers in Chicago needed: Clinical Study Community Engagement Program for Adults with Sickle Cell Disease ages 18-55 on May 18 at Loretto Hospital in Chicago.

Pfizer Executive Outlines Vision for Treating Sickle Cell Disease, Other Rare Diseases: Michael Wajnrajch, MD, is senior medical director for Pfizer’s Rare Disease Group and pediatric endocrinologist on the faculty of New York University. Wajnrajch outlined his company’s vision for gene therapies at the 2nd International Congress on Advanced Treatments in Rare Diseases, held March 4-5 in Vienna, Austria.
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