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Happy 2019!  

Happy New Year! Sick Cells is gearing up for one of its busiest years yet. We've already hit the ground running with a broadcast appearance for the Great Chicago Blood Drive and Dinner for a Cause. Next up, we're heading to Capitol Hill for Rare Disease Week 2019.

This month, we'll discuss Rare Disease Week, recap our January events and share some News You Can Use, but first...

A Minute With Marqus

Every year, the Red Cross and ABC 7 hosts a blood drive called the Great Chicago Blood Drive. In November 2018, Ashley and I were invited to share our story ahead of the big event. As you may know, blood transfusions are key when battling sickle cell. Between chronic blood transfusions, blood exchanges, and emergency transfusions, I have received over 500 units of blood in my life. After every transfusion, I feel better and ready to take on the world.

Marqus with ABC 7 Chicago discussing the importance of blood donation.
 

When your body doesn’t have enough healthy and oxygenated cells, you feel weak and every day-to-day activity becomes difficult. Needless to say, I’m grateful for blood transfusions and am always happy to share the importance of blood donation with anyone that will listen.

Marqus and Dr. A. Kyle Mack during their live ABC 7 Chicago interview.
After our first ABC 7 segment, I was invited back to ABC 7 for a live interview. They offered me a platform to talk more about sickle cell and what blood donors do for the sickle cell disease community. I fastened my oxygen to my back, put Chewy (my dog) into his work vest and headed downtown to the studio. On the day of the Great Chicago Blood Drive, 1,200 units of blood were donated. Thank you to those people for donating. I’m alive and writing this because of you. If you want to get involved and donate please visit www.redcrossblood.org.
The Valentines, Chewy, Dr. A. Kyle Mack and Joy from the Red Cross pose for a picture at ABC 7 Chicago.

Rare Disease Week 2019

Rare Disease Week is quickly approaching! Sick Cells is getting prepped to lobby with other rare disease advocates from across the country. If you're attending, don't forget to register for the events throughout the week. Key dates for 2019 are the following:
  • Sunday, February 24: Documentary Screening
  • Monday, February 25: Legislative Conference
  • Tuesday, February 26: Lobby Day Breakfast & Lobby Day
  • Wednesday, February 27: Rare Disease Congressional Caucus Briefing & Rare Artist Reception
  • Thursday, February 28: NIH Rare Disease Day

On Monday, February 25, Sick Cells co-founder and president, Ashley, is speaking on an advocacy panel, "Your Own Legislation" at 11:15 a.m. Ashley will join other rare disease advocates to discuss the importance of advocacy for legislation.

For more info about Rare Disease Week and how to get involved with the EveryLife Foundation, check out their 
website or email Lindsey Cundiff at Lcundiff@everylifefoundation.org. 
Rare disease advocates during Rare Disease Week 2018.
While many will join together in Washington DC for Rare Disease Week, Rare Disease Day takes place across the country on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

Visit the
National Organization for Rare Disorders' (NORD) events page for more information on Rare Disease Days happening across the country and how you can get involved. Please note: Not all rare disease day events take place on February 28. 

Sick Cells will attend Rare Disease Day in Springfield, Illinois on February 27.

The ABC 7 Great Chicago Blood Drive

Ashley and Marqus chat with Hosea Sanders of ABC 7 Chicago news. Together, they discuss the importance of blood donation during the Great Chicago Blood Drive on January 16.
On January 16, the Red Cross partnered with ABC 7 to promote the Great Chicago Blood Drive. The drive brought in over 1,000 units of blood. To give you an idea, one person can donate 1 pint of blood. It takes 8-12 pints of blood to make a unit of blood. That means it requires about 8 blood donors for one blood transfusion. 

Dinner for a Cause

Sick Cells hosted its first ever Dinner for a Cause fundraiser this January at Rock Bottom in Bolingbrook, Illinois. Thank you to Rock Bottom for their hospitality and generous donations and a big thank you to all attendees. It was a fun night of good food and great company. 

Spotlight Interview: Laterrica & Jew-El

As mainstream media continues to cover SCD, we think it's important to share the stories of those who grew up with SCD when it was less known in both our hospitals and schools. By reflecting on these stories, we can not only reflect on the progress our community has made but also remember how far we've come together.

In Memphis, Sick Cells met Laterrica, 34, and Jew-El, 30, who both live with sickle cell SS. Here are snippets of their stories.
Laterrica in Memphis at the Mark Walden Memorial Sickle Cell 5K Run/Walk in September 2018.
Sick Cells: When you were in school and you had sickle cell, were your teachers cooperative with you? Did they know what sickle cell was?

Laterrica: No, no. It took a long time for a lot of people to understand what sickle cell was. I had teachers actually be mean to me. I had a teacher actually tell the class, "she got sickle cell." I had everybody look at me different, like I was the weirdo.

Sick Cells: When your teacher put that out there, did you tell your mother?

Laterrica: No, I didn't. I didn't want to tell my mother. I just held it inside but it hurt so bad for her to tell the class that I had sickle cell, because now it was like, oh we don't want to be by her. They didn't know what sickle cell was at that time.
Jew-El in Memphis at the Mark Walden Memorial Sickle Cell 5K Run/Walk in September 2018.
Sick Cells: Were your teachers cooperative with you and made sure you had all the materials you missed?

Jew-El: No, not at all. My teachers were actually the worst, they fought us on
everything. My mom was always at the school fighting for me. I had a IEP, I had a 504 Plan. I had everything in place, but the teachers were still just weren't receptive to anything. They didn't want to do anymore work. They didn't want to do extra work for this student.

Sick Cells: When you were in school, how did sickle cell affect you?

Jew-El: I was sick a lot, I missed a lot of school. I was in and out of the hospital. I missed at least half of each grade in hospitalizations. I had to do a lot of makeup work for school, but I did pass, and I graduated in 2006.

Upcoming 2019 Conferences

2019 CMS Quality Conference. January 29-31. Join thought leaders in American health care quality improvement at this premier learning and action event.

Chicago Sickle Cell Summit. February 28. The Chicago Sickle Cell Summit convenes stakeholders and providers from health system leadership, primary and specialty care, and the sickle cell community for updates in sickle cell care. 

Sickle Cell Community Consortium Leadership Summit. March 12-17. The SCCC is hosting its annual leadership summit. This meeting serves as a business meeting, training, and best practices updates, and serves as the annual gathering of the seated partners of the General Assembly.

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

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.
Do you have any walks or talks you'd like Sick Cells to include in its monthly newsletter? Please send details to avassall@sickcells.org. Please note: Sick Cells sends its newsletter out the last weekday of each month. 

News You Can Use

These Patients Had Sickle-Cell Disease. Experimental Therapies Might Have Cured Them: Success against sickle-cell would be “the first genetic cure of a common genetic disease” and could free tens of thousands of Americans from agonizing pain.

Partial-match transplants ease the grinding pain of sickle cell disease: Perfect matches are nearly impossible to find for sickle cell patients. But a parent is automatically a half-match, and thus eligible to donate bone marrow.

Howard University President Launches ‘Run To Cure Sickle Cell’ Campaign: Howard University President Wayne A.I. Frederick has unveiled a campaign to raise awareness and funds for the school’s Center for Sickle Cell Disease.

Vaso-Occlusive Pain Linked to Menstruation in Some Patients, Study Finds: Acute vaso-occlusive pain is associated with the onset of menstruation, and about 25% of the women with sickle cell disease can differentiate these episodes from menstrual-cramp pain, a study found.
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