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Cheers to 2018!  

For the third December in a row, we're recapping Sick Cells' highlights from the past year. In 2018, Sick Cells expanded more than we ever imagined. Not only did we meet so many new people, we were able to help make significant impacts in the community as a whole. 

Get ready for our top 5 favorite moments of 2018 and what we're looking forward to most in 2019. We'll have some News You Can Use, but first...

A Special Minute With Marqus

On this edition of Minute With Marqus, I want to include my sister, co-founder and president of Sick Cells, Ashley Valentine. If you've been with us for awhile now, you're likely familiar with our Year in Review newsletter. For those that are new, Ashley and I like to take the time to reflect and thank those that have joined us on this journey  we couldn't fulfill Sick Cells' mission without your support.
ASHLEY WILL TEXT AMANDA PICTURE OF ASHLEY AND MARQUS
This year has been a whirlwind for both the Valentine family and Sick Cells as an organization. As a family, we worked through Marqus' sickle cell disease, like a total hip replacement surgery, leg ulcer care (they're healed!), parental layoffs, new medications, new diagnoses, loss of a friend and fellow warrior, and many other life encounters when living with sickle cell disease. 

Through our personal experience with sickle cell, we really reflected on 2018 to think about what more we could accomplish with our platform and fiercely pursued those goals. From lobbying in DC to Springfield during Rare Disease Week to uniting the community in support of S.2465 to interviewing more than 30 SCD advocates in various cities in the US, we truly realized how much can be done when we join together. 
Marqus and Ashley prepare to speak with congress members during Rare Disease Day in Illinois 

Thank you to all of those who continue to support Sick Cells in any way. Your valuable time, generous donations and supportive notes do not go unnoticed. In 2019, we hope to achieve more together, as a community. I know we speak for many when we say, 2019 will be the year we see major shifts begin. We vow to continue involving ourselves in efforts to elevate the voices of sickle cell disease and our stories of resilience.

We wish you all a healthy, prosperous and peaceful new year. To a great 2018 and even better 2019.

Cheers,
Marqus and Ashley

We highlight our top five moments from 2018. 
In February, Marqus was featured on 1A discussing growing up with sickle cell and how Sick Cells began. Shortly after, Marqus shared commentary with the National Journal on a timely topic.

In September, Marqus appeared on Fox 32 with Talana Hughes of SCDAI and another SCD advocate, Michelle, to discuss the importance of sickle cell awareness year round. 

Later in 2018, Marqus and Ashley
appeared on ABC 7 Chicago to speak about sickle cell disease, Sick Cells and the importance of blood donation.

By increasing our media relations efforts, Sick Cells hopes to make even more appearances in the media in 2019.
Ashley and Marqus Valentine, co-founders of Sick Cells, share their family's story with the American Red Cross.
This summer, Sick Cells attended 3 sickle cell walks  all in different regions of the United States. Of course, we made a stop at the Sickle Cell Disease Association of Illinois' annual Walk/Jog/Bike-a-thon in Chicago. There, we caught up with a few familiar faces and interviewed new families and individuals. You can read the stories from Chicago on our Instagram or Facebook page.

We also made it back to New York City for the Sickle Cell Thalassemia Patient Network's annual walk in Central Park. We met new faces in Memphis after attending the Mark Walden Memorial Sickle Cell 5K Run/Walk.

We're excited to return to these walks next year and expand to new regions.
Sick Cells meets and interviews participants in New York City in September
Every year, the U.S. observes the last day of February as Rare Disease Day. During the week, multiple organizations celebrate by educating each other on unique rare diseases, learning about rare disease legislative issues, and sharing their stories with policymakers.

This year, In Washington, DC, the EveryLife Foundation brought together over 500 rare disease advocates to lobby for rare diseases on the hill, and more than 30 sickle cell advocates traveled to DC for the events.

Rare Disease Week marked the beginning of new momentum for Sick Cells, and illuminated what we can achieve when we join forces with other disease groups.
SCD advocate, Kevin, joins other Rare Disease Advocates in DC (left), dozens of rare disease advocates meet in Washington DC for Rare Disease Week in February (right)
In August, Sick Cells joined a growing number of patient organizations in the National Organization for Rare Diseases (NORD) membership community. Sick Cells is the first and only sickle cell disease organization of more than 300 member groups. Together, we will continue to work closely with rare disease and SCD networks to advocate for those with rare disorders. 

We'll provide updates on our membership and activities in 2019.
Since being introduced by Senator Cory Booker (D-NJ) and Senator Tim Scott (R-SC), Sick Cells followed the journey and lobbied for S.2465  Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018. 

After passing to the Senate during Rare Disease Week in February, it was inspiring to see the community come together and lobby for the final passing of the bill during Congress' lame duck sessions. We're excited to see how this renewed legislation positively impacts our communities.
Sick Cells teamed up with various leaders in the rare disease and SCD space to create a toolkit and help individuals #Votesicklecell in 2018

Rare Disease Week 2019

Travel stipends closed on December 14 for Rare Disease Week this year. Applications submitted after the deadline will be placed on the waitlist. We'll let you know on our Instagram when event registration opens. 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, Feb. 28: NIH Rare Disease Day
For more information 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. 
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

‘From Nothing to Gangbusters’: A Treatment for Sickle Cell Disease Proves Effective in Africa: A drug that protects children in wealthy countries against painful and sometimes lethal bouts of sickle cell disease has been proven safe for use in Africa, where the condition is far more common, scientists reported on Saturday.

Bipartisan bill aimed at fighting sickle cell disease signed into law by Trump: The bill also reauthorizes a current sickle cell disease prevention and treatment program for nearly $5 million each year over the next five years.

19 bold predictions for science and technology in 2019: Francis S. Collins, director of the National Institutes of Health, predicts 2019 will be the year when cures of sickle cell disease are reported in dozens of individuals taking part in clinical trials of gene therapy. 
Copyright © 2018 Sick Cells, All rights reserved.

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