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Sittin' on Capitol Hill  

This month, the Sick Cells team prepped, planned and ultimately lobbied on Capitol Hill in Washington DC for Rare Disease Week (RDW). We joined arms with 450+ other rare disease advocates, including about 40 sickle cell advocates.

To get you up to speed, we'll recap Rare Disease Week, discuss the Sickle Cell Treatment Act and Black History Month. We'll have some News You Can Use, but first... 

A Minute With Marqus

This month, Marqus traveled to Washington DC for Rare Disease Week on Capitol Hill. While the days in DC were fast and full of action, the journey to getting there was an extensive one. 
Marqus stands in front of Senator Tammy Duckworth's office in Washington DC during the lobby day of Rare Disease Week on Capitol Hill
Leading up to Rare Disease Week, I was trying my best to stay healthy but my body had other plans. I was making sure to hydrate throughout the day, keep up with my medication doses and started consuming a lot of vitamin C. Despite all of the precautions, I still ended up sick and in the emergency department on Tuesday morning — just four days before I was scheduled to fly out to Washington DC. 
The United States Capitol
When I got to the emergency department, two nurses had to access my port and do some blood work to check if I had any infections running through my body. At that point, I was getting nervous about making it to DC. After running a few more tests, they decided to do a CAT scan. It turns out I had severe congestion in my head.

After getting some IV fluids, I was ultimately sent home with a prescription and hopefully back on track for my flight to DC. On Wednesday, I went back to the hospital for a follow-up appointment and my nurse practitioner recommended that I get one unit of blood. I spent the next few days resting, hydrating and taking my medication before getting a unit of blood on Friday. On Saturday, I flew to DC. 
My time in DC was incredible. I met so many other sickle cell advocates from across the country that devote their time to getting our voices heard. I believe when we work together, we create one cohesive, loud and powerful voice to be heard. After having such little mobility over the last two years with a bad hip, I was eager to get out and go. My favorite part was our sickle cell advocate dinner and meeting with Congress on Tuesday.

I can't wait to share more about my experience over the next month. #RareDC2019.
The Sick Cells team at the Sickle Cell Advocates Networking Dinner in DC

We Are Rare 2019

Earlier this week, Sick Cells volunteers and staff joined 450+ rare disease advocates in Washington DC for the EveryLife Foundation's annual Rare Disease Week on Capitol Hill.

Each year, Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

More than 40 sickle cell advocates attended this year from across the country. It was incredible to have so many faces and organizations represented in one space to advocate not only for SCD, but all rare diseases that impact more than 30 million Americans every single day. 
Rare Disease Week 2019 attendees 
Marqus and rare disease advocate, Casey, pose for a picture between meetings with Congress members. 
During Rare Disease Week, so many exciting events took place. On Monday, Ashley Valentine, Sick Cells co-founder and President, spoke on a panel at the legislative conference about how to mobilize communities to advocate for legislation.

Ashley retold the long, and sometimes complicated, journey of
S.2465 — the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018. She highlighted how the sickle cell community, and overall rare disease community, joined together to contact their representatives and ultimately get the bill passed and officially signed to law on December 18, 2018.

It was a powerful recollection with a goal to inspire and motivate other rare disease advocates to get their voices heard by elected officials.
Ashley Valentine sits on a panel during Rare Disease Week 2019
Sick Cells also hosted a Rare Disease Advocates Networking dinner for those representing SCD on Capitol Hill. From Nevada to New York, SCD patients and advocate groups came together to fellowship and discuss their roles in the community. 

Thank you to all those that attended! We're looking forward to meeting together again next year. Stay tuned for more updates from Rare Disease Week 2019! 
Sickle Cell Advocates Dinner 2019

Thank You for Your Donations

If you'd like to support us as we continue to make our way through Rare Disease Week, any donations are appreciated. 
Donate Here

Happy Rare Disease Day!

While many joined 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.

Please note: Not all rare disease day events take place on February 28. For a local Rare Disease Day lobby event, visit the Rare Action Website

Black History Month

As Black History Month comes to an end, we'd like to honor and remember Dr. Doris Wethers who passed on January 28, 2019 at the age of 91.

"Dr. Wethers broke racial barriers in the medical world before gaining renown for research and advocacy that helped lead to mandatory testing of all newborns for sickle cell anemia."

"Dr. Wethers opened sickle cell anemia programs at all three hospitals, conducted research and helped draft landmark legislation in New York to require screening of infants for the disorder. Over the course of her career at the hospitals, the average life expectancy of children born with sickle cell rose from about 18 to 50.

The increase was attributed largely to early detection, infection prevention through the use of penicillin and other breakthroughs that helped mitigate pain and prolong life."


Rest in peace, Dr. Doris L. Wethers. As a community, we acknowledge and appreciate how much she contributed to SCD and Black history.
Doris L. Wethers in an anatomy class at Yale Medical School in 1948.
Photo from The New York Times via the Wethers family
Dr. Wethers at the Yale School of Medicine bicentennial celebration in 2011.
Picture by John Curtis, Yale University

Upcoming 2019 Conferences

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 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

4 Takeaways on Curbing Opioid Abuse and Misuse: According to the Centers for Disease Control and Prevention (CDC), more than 130 people die every day from opioid overdose — both from prescription and illicit drugs — and at least half of all deaths involve a prescription opioid. 

Sending A Child With Sickle Cell Disease Off To College: It's a disease that hits home for me and my family. My youngest son, Teemer Barry, was diagnosed with sickle cell disease when he was a baby. This past fall, he went off to college. Most importantly, Teemer has had only one serious pain crisis.

Nigerian scientists patented a sickle cell drug using a traditional herbal remedy—then it all fell apart: The successful development of a drug for the treatment of a sickle cell anaemia using a traditional herbal remedy by Nigerian scientists was widely regarded as a very significant breakthrough in medicine in 1998.
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