January 2021
This month, we’ll discuss our upcoming Your Black History Month campaign, the March 2021 Policy Forum, the Sick Cells + Avalere Roadmap, some recent blogs to catch up on and some News You Can Use!
View some of our most recent media mentions. We’re proud to be featured on local
and national levels, speaking about sickle cell disease.
Ashley Valentine of Sick Cells spoke with OZY Media about sickle cell disease treatments and her hopes for the future of people living with sickle cell.
First Lady Melania Trump and the Health and Human Services Department (HHS) hosted a roundtable titled “Improving the Lives of Americans Living with Sickle Cell Disease” on Monday September 14, 2020. The participants included U.S. Public Health Service officials, sickle cell patients, and sickle cell advocates including our own Sick Cells’ President and CEO, Ashley Valentine.
The Chicago Tribune released an article regarding the loss of Sick Cells’ co-founder, Marqus Valentine.
Ashley is a Co-Founder and President of Sick Cells nonprofit. She is the youngest sibling of her family. Her older brother and Co-Founder of Sick Cells, Marqus Valentine, has sickle cell anemia, Hgb ss.
Our community has a lot to say. Read up on some personal views and perspective
from Sick Cells’ members and the SCD community.
This year, Sick Cells is celebrating Black History Month with its #YourBlackHistory series which aims to highlight the voices of Black sickle cell warriors, caregivers and advocates who are making history today through their advocacy work, commitment to service, and devotion to improving the lives of those in the community.
As part of the series, we’re spotlighting Mapillar Dahn — president and founder of MTS Sickle Cell Foundation, Inc. and the mother of three children who live with sickle cell — and her perspective on the sickle cell disease community’s unique needs.
The goal of Your Black History Month is to amplify the voices of Black sickle cell warriors, caregivers and advocates who are making history, today, through their advocacy work, commitment to service and devotion to improving the lives of those in the community. Throughout the month of February, Sick Cells will highlight five SCD advocates and their unique stories. #YourBlackHistoryMonth
See an event you’re interested in? Join us.
March 12 - 14, 2021
All Day
Hosted by The Sickle Cell Association of Texas Marc Thomas Foundation, Camp Next Level is a three-night, four-day intense transitional program for teens ages 15-19 with sickle cell disease. This event seeks to address the host of issues and concerns that come from underprepared transitions from pediatric to adult services.
This event will be fully virtual this year.
Learn more: HERE
Register: HERE
March 23, 2021
11:00 am - 1:30 pm
Global Genes and the EveryLife Foundation have partnered to host RARE on the Road events around the country, developing the next generation of advocacy leaders.
With feedback from the community, RARE on the Road 2021 will include one interactive webinar and three in-person meetings. While all parts of this event are geared toward empowering advocates to build their skill set, enhance their knowledge, engage in advocacy, and network with their local rare disease community, in-person events will focus on state-specific information based on their location.
Stay informed. Whether it be news on treatments, laws or activism, sickle cell
information is always churning.
The White House released a proclamation recognizing September as National Sickle Cell Awareness Month.
First Lady Melania Trump and the Health and Human Services Department (HHS) hosted a roundtable titled “Improving the Lives of Americans Living with Sickle Cell Disease” on Monday September 14, 2020. The participants included U.S. Public Health Service officials, sickle cell patients, and sickle cell advocates including our own Sick Cells’ President and CEO, Ashley Valentine.
Black Health Matters to collaborate with When We All Vote (co-launched by Michelle Obama) to address sickle cell, among other disease, through virtual fundraiser.