Every month, you can count on a carefully curated
Newsletter from the Sick Cells team.
We do our best to round up the latest in treatment and policy news, spotlight SCD warriors,
and give you a Minute with Marqus. Sign up for our newsletter to ensure you get your
monthly dose of sickle cell news.
It’s hard to believe that after this weekend, we’ll only have two months left in 2020. While this year has been one of unprecedented challenges, it’s also presented new opportunities for the sickle cell disease (SCD) community. In these final 60 days, we’re focusing on finishing strong and hope you can find the motivation to do so, as well.
A Sickle Cell Awareness Month to Remember! Team Sick Cells did a lot of planning for National Sickle Cell Awareness Month. We prepared content, social media posts and Instagram Lives with a goal to, as always, spread as much helpful information as possible on sickle cell disease (SCD)….
On Monday, September 14, we attended a roundtable discussion hosted by the First Lady of the United States to mark Sickle Cell Awareness Month and discuss the challenges that our community continues to face. We learned that this type of meeting happens once in a lifetime and were honored to represent the SCD community while there.
Sick Cells is proud to continue our work with the Assistant Secretary of Health, Admiral Brett Giroir under the Department of Health and Human Services Office of Minority Health. This work is driving change to advance the care and improve the quality of life for people with sickle cell disease. We will attend a historic roundtable discussion with the First Lady of the United States entitled, “Improving the Lives of Americans with Sickle Cell Disease.”
While things are different this year, we’re still happy with our progress. A revamped website, a thriving ambassador program and a successful blood drive all point to our momentum. We keep moving forward. It’s what Marqus would’ve wanted.
It is with a heavy heart that we formally announce the passing of our co-founder, son, brother, uncle, cousin, friend and teammate, Marqus Valentine. Marqus gained his warrior wings on Monday, June 22, after 36 years of so much life. Words cannot explain how incredibly devastating this news is for the Valentine family and all of those who knew and loved Marqus. This month, we’ll honor and remember our eternal angel.
For the last several months we’ve encouraged the community to stay vigilant, healthy and safe amid the COVID-19 outbreaks and we’ll continue to do so for the foreseeable future. Now, more than ever, our community must continue to encourage each other to practice being safe.
Recently, a fellow SCD warrior reminded us that this community is built on resilience. And while the COVID-19 pandemic has proved challenging for our families, friends, hospitals, favorite restaurants and more — we must continue to look out for each other.
As the COVID-19 outbreak spreads across the globe, the health of our SCD community has been top-of-mind for Sick Cells. We’re encouraging everyone, as much as possible, to practice social distancing and to reach out to their healthcare professionals, families and friends for support during this unprecedented time. Staying physically apart might be challenging — but that’s when having virtual catch ups or phone calls can help you feel connected and stay in touch.
Leaping right in — this month, we’ll recap the last few months of the SCD ICER value assessment, spotlight a couple of sickle cell stories and share Rare Disease Week 2020 updates. We’ll have some News You Can Use, but first…
Happy 2020 from Team Sick Cells! We can’t believe this year marks the 4th year of our monthly newsletter. Thank you for your endless support. Since the beginning of the year, our team has devoted a lot of time to the ICER value assessment (and the future of new SCD drugs) – with the final ruling quickly approaching in March. However, in the midst of its whirlwind, we were reminded of just how precious life can be.
This month, we’re reflecting on a year of wins, challenges and new opportunities for Sick Cells. 2019 lit a fire in us to expand our reach within the community and help further impact the lives of those living with and impacted by sickle cell disease. We’re so grateful for the new faces we’ve met, policies we’ve helped change and inspiring events we were able to attend.