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THE ONE-OH-ONE
September 2020

Updates on a bunch of sickle cell nerds!
Meet the Team
CELEBRATING SICKLE CELL AWARENESS MONTH! 🎉

In light of Sickle Cell Awareness Month, we’re featuring inspiring stories of individuals living with sickle cell disease, proving how the sickle cell community finds strength in adversity. Our theme, ”Sickle cell taught me…” explores the valuable life lessons and the positive impact of living with sickle cell disease. These stories are paired with important facts about sickle cell that can be shared with family and friends in our month-long crusade of celebrating, educating, and raising awareness for sickle cell.

Check out the other activities Sickle Cell 101 has got going below on including a SickleCellCon teaser, our interview with Fox TV Soul, The Sickle Cell Podcast and more!

 

SickleCellCon is launching this Friday, September 25th!

We’re excited to kick off the SickleCellCon platform with the SickleCellCon Virtual Event featuring singing, dancing, poetry and more this Friday at 6pm ET/ 3pm PT on Sickle Cell 101's Instagram and Facebook Live.

This event marks the launch of SickleCellCon, a virtual platform hosting incredible talent within the sickle cell community. There will be performance, testimonials, panels, exhibits and more!

Get a sneak peak of the event and check out the teaser.
 
SickleCellCon Teaser
INTERVIEW ON FOX TV SOUL

Watch Founder and Executive Director Cassandra Trimnell on Fox Soul's 
The Book of Sean 
Did you catch founder and executive director, Cassandra Trimnell's interview on The Book of Sean on Fox TV Soul?

Cassandra shares the challenges of living with sickle cell, as well as the inner strength people living with sickle cell all cultivate in order to succeed and thrive. She also explains what inspired her to start Sickle Cell 101. You can catch the full interview now.
 
Fox TV Soul Interview
THE SICKLE CELL PODCAST
Catch up with the latest from The Sickle Cell Podcast. Last month’s episode featured Rhiannon and her mother, Scherika's incredible journey of getting a bone marrow transplant.

This month join Cassandra and Stephen Sickle Cell Awareness Month themed episode on our "Sickle Cell Taught Me" campaign. 


 
Podcast Episodes
COVID-19 SURVEY STUDY

Are you an adult living with sickle cell disease?

Tell us how the COVID-19 pandemic has impacted you.

The National Human Genome Research Institute, National Institutes of Health (NIH) in collaboration with Sickle Cell 101 is enrolling adults in the U.S. with sickle cell disease to examine the impact of the COVID-19 pandemic on individuals living with sickle cell disease.

The goal of this research is to understand the experiences of people living with sickle cell disease during the pandemic and its impact on their disease management and psychosocial health.

Your responses to the survey will remain completely anonymous and will not be shared with your doctor or anyone on your medical team, nor will your responses change the quality of care that you receive.

To be eligible to complete this survey:

  • You must be diagnosed with sickle cell disease
  • Be at least 18 years of age or older
  • Live in the U.S.

The survey will take approximately 30 to 40 minutes, with the opportunity to revisit and complete it at your own pace. Upon completion of the survey, you will receive a $20 gift card as a token of our appreciation.

If you’re interested and meet the eligibility requirements above, click on the button below and if you're eligible, a survey link will be emailed to you.

COVID-19 Survey Study
PARTNERSHIP SPOTLIGHT
News from bluebird bio: Visit A New Website to Learn How You Can Advocate for Better Sickle Cell Care

In partnership with leading patient advocacy organizations, bluebird bio has launched SparkSickleCellChange.com. This website is meant to serve as an educational resource to improve the holistic understanding of sickle cell. SparkSickleCellChange.com aims to highlight the impact of sickle cell on patients, their families, and society by amplifying the voices and stories of those impacted by the disease. Click below to learn more and sign up to Be The Spark for Change in Sickle Cell!
 

Learn More About Be The Spark
THANK YOU SPONSORS
A great big thank you, as always, to our 2020 sponsors who make our work possible.
Copyright © 2020 Sickle Cell 101, All rights reserved.


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