2020 In Review

Highlighting Sickle Cell 101's 2020 Activities

2020 has notably impacted us all in various ways, but such changes have also presented the sickle cell community with various opportunities for growth and positive impact to the people we serve at Sickle Cell 101 (SC101).

We are excited to highlight some of our activities in 2020.

 


2020 By the Numbers

Our Response to the COVID-19 Pandemic

 

There’s no denying that the COVID-19 pandemic made an impact on our lives and especially the sickle cell community. The following are our responses to support the sickle cell community during the COVID-19 pandemic:

First to put out information to the sickle cell community

SC101 was the first organization to widely disseminate education to the sickle cell community about COVID-19, how to detect symptoms and stay safe, and the best ways to manage sickle cell disease (SCD) during the pandemic. Additionally, SC101 shared SCDAA’s COVID-19 guidelines for patients and addressed false information regarding COVID-19 and sickle cell disease.

 

Relevant information from sickle cell experts

In response to the questions and concerns we received from the sickle cell community regarding isolation and mental health, SC101 hosted a podcast episode featuring expert sickle cell clinical psychologist, Dr. Marsha Treadwell, who shared how to manage stress and mental health during the pandemic.

Additionally, the community requested information on managing pain at home to avoid going to overcrowded Emergency Departments. In response SC101 hosted a live podcast episode with adult hematologist Dr. Julie Kanter. This episode reached about 15.8k viewers, producing one of the highest sickle cell engagement events of the year.

 

Online peer support program

Lastly, SC101 kept the community updated on news and stories of individuals with SCD battling and beating COVID-19. With aims to provide peer support, SC101 created its new program Sickle Cell Meetups, an online peer support group allowing individuals within the community to connect and voice their experiences while combating isolation during the pandemic.

SC101 will continue to bring pertinent pandemic information and support the global sickle cell community.

Social Media Education

BEST PERFORMING POSTS
OUR FOLLOWERS

CAMPAIGNS

In 2020, we hosted several campaigns that educated the sickle cell community and the general audience.

 

Black History Month

Our 2020 Black History Month campaign featured changemakers and events throughout sickle cell’s rich history featuring: Actor Bolaji Badejo, Dr. James Africanus Beale Horton, Dr. Roland B Scott, the Sickle Cell Disease Awareness commemorative stamp, and sickle cell musicians: Miles Davis, Paul Williams, Georgeanna Tillman, T-boz, and Prodigy.

 

Ramon Reed Instagram Takeover

In April SC101 hosted an Instagram Takeover with Disney Channel actor and Broadway singer Ramon Reed. During the live he talked about his experience as an actor, shared tips on how to stay healthy at home during the pandemic, and answered viewers’ questions.

Reed also served as celebrity guest judge of the 7th Annual  SCAY Awards.

SCAY Awards

In partnership with Emmaus, this year SC101 honored the phenomenal 2020 Sickle Cell Advocate of the Year Award winners, Sharifu K. Tusuubira (International advocate), Dr. Coretta M. Jenerette (National advocate), Dr. Oluwatosin Adesoye (Healthcare provider advocate), and Isaac Okello (Community advocate) for their outstanding work in sickle cell.

 

World Sickle Cell Day

SC101 hosted a 20-post campaign featuring global Faces of Sickle Cell in our annual campaign and the history of World Sickle Cell Day highlighting key figures like First Lady of Congo Antoinette Sassou, Raymond Serge Bale of Congo, and the sponsoring countries involved in establishing June 19th as World Sickle Cell Day. 

 

 

My Bone Marrow Transplant Journey

In August, SC101 partnership with Be The Match, to feature the story of teenager Rhiannon and her mother Scherika Perry, who shared their experience in undergoing bone marrow transplant to cure Rhiannon’s sickle cell disease and lupus.

 

Sickle Cell Awareness Month

SC101 provided information geared toward both the sickle cell community and the general audience with its annual quick facts on sickle cell disease and sickle cell trait. The theme of this year’s Sickle Cell Awareness Month campaign was "Sickle Cell Taught Me…", where SC101 featured the powerful responses of individuals and families within the sickle cell community. SC101 also launched virtual SickleCellCon, featuring important discussion panels and the talents of the sickle cell community.

 

Gene Therapy

As part of our efforts to provide evidence based education around various treatment options for sickle cell, Sickle Cell 101 partnered with Aruvant Sciences in October to host an educational campaign on gene therapy.

This campaign highlighted various educational social media posts on gene therapy and a live podcast episode featuring Aeon Chintersingh, who underwent gene therapy to cure his SCD and Dr. Isaac Odame, a healthcare provider and medical director of the Global Sickle Cell Disease Network.

NFL’s #MyCauseMyCleats

In December, Cleveland Browns wide receiver Donovan Peoples-Jones, who is passionate about sickle cell awareness selected Sickle Cell 101 as his organization of choice for the NFL’s #MyCauseMyCleats campaign. All proceeds from the campaign are donated to Sickle Cell 101.

Partnerships

2020 was a year of collaboration for Sickle Cell 101 in effort to advance research, provide education to multiple stakeholders, and raise sickle cell awareness.

COVID-19 Burden Survey in Partnership with NIH-NHGRI

As part of the INSIGHTS study, NIH-NHGRI partnered with Sickle Cell 101 to create and distribute an online survey on the burden of the COVID-19 pandemic on individuals with sickle cell disease.

Launch of CaRISMA with University of Pittsburgh

In partnership with the University of Pittsburgh, Sickle Cell 101 is leading an arm of the CaRISMA study which uses a chatbot to provide sickle cell education and cognitive behavior therapy to help reduce the burden of pain in sickle cell disease.

Emergency Department (ED) Education with UCSF Benioff Children’s Hospital Oakland

Sickle Cell 101 partnered with UCSF Benioff Children’s Hospital Oakland to educate Alameda Health Systems on providing care to sickle cell disease patients in the Emergency Department to ED residents.

Sickle cell education with UC Berkeley

In collaboration with UC Berkeley’s Lawrence Hall of Science, Sickle Cell 101 provided educational material for a video series.

SWAY Steering Committee

Sickle Cell 101 participated in the SWAY Steering Committee, a global survey study disseminated to 16 countries across 5 continents assessing symptoms, daily life activities, work, education, treatment goals and disease management. SWAY surveyed over 2k sickle cell disease patients and 1.2k healthcare providers. Executive director, Cassandra Trimnell presented an abstract at European Hematology Association (EHA) virtual conference.

Founding Member of GASCDO

Sickle Cell 101 became a founding member of the Global Alliance for Sickle Cell Disease Organizations (GASCDO), a global patient advocacy organization.

WeST SDC Clinical Trials Network Community Advisory Board

As part of ASH’s Clinical Trial Network, Sickle Cell 101 sits on the WeST SDC Clinical Trials Network Community Advisory Board.

Collaborator on Spark Change for Sickle Cell Website

Sickle Cell 101 serves as a main collaborator to bluebird bio’s Be The Spark for Sickle Cell, a resource platform dedicated to sickle cell advocacy and empowerment.

PRIME Education Series for Healthcare Providers

Sickle Cell 101 participated in PRIME’s education video series dedicated to healthcare providers interested in sickle cell disease.

Sick Cells #FundSickleCell

Sickle Cell 101 joined Sick Cell’s #FundSickleCell campaign which advocated the appropriation of $25 million to fund sickle cell next year by encouraging the community to reach out to their members of the U.S. Congress.

Community Education

2020 was a year of collaboration for Sickle Cell 101 in effort to advance research, provide education to multiple stakeholders, and raise sickle cell awareness.

COMPANY PRESENTATIONS


Sickle Cell 101 participated in multiple presentations and discussions at various pharmaceutical and biotech companies providing education on patient experiences, clinical trial enrollment, COVID-19 pandemic, sickle cell treatments, and improved healthcare for the sickle cell community.

Stanford University Pre-Medicine Program

Annually Sickle Cell 101 provides education to Stanford University’s pre-medicine program to provide holistic material on sickle cell disease and sickle cell trait. The presentation this year shared multiple stakeholder point-of-views on sickle cell.

IGI Berkeley Science Festival – CRISPR, Sickle Cell, and Society

This year Sickle Cell 101 presented at Innovative Genomics Institute Berkeley Science Festival in a panel on CRISPR, Sickle Cell and Society.

MCPHS Pharmacy Conference

Sickle Cell 101 presented at the Massachusetts College of Pharmacy and Health Sciences Minorities in Clinical Trials Conference Series last month where we emphasized the importance of the patient and caregiver voices in clinical trials.

The Annual Conference Academy for Sickle Cell and Thalassaemia (ASCAT) Conference

Sickle Cell 101 presented at the Sickle Cell Disease Patients Educational Session at ASCAT 2020.

European Hematology Association (EHA) Virtual Conference

Executive Director, Cassandra Trimnell presented an abstract: Patient and Healthcare Professional Perceptions of Sickle Cell Disease Impact on Daily Life, Symptom Burden and Treatment: Results from the International Sickle Cell World Assessment Survey (SWAY).

Media

2020 was a year of collaboration for Sickle Cell 101 in effort to advance research, provide education to multiple stakeholders, and raise sickle cell awareness.

Cassandra Trimnell was a guest of FOX TV Soul’s The Book of Sean, sharing her experiences as a person living with sickle cell disease. She also appeared on The Riche Life sharing how she turns her pain into purpose. Trimnell was also presented the Champion’s Award by SCDAA for her commitment to the sickle cell community. Dr. Stephen Boateng was a guest the Pharmacy Podcast Network sharing why more pharmacists should focus on sickle cell disease.

Sponsors

We are so very thankful to those who make our work possible!

Thank You

The team at Sickle Cell 101 would like to say thank you to the sickle cell community for continuing to engage in and uplift work that is incredibly meaningful to us. 2020 kept us on the edge of our seats, but as a result we’ve proven our resilience as a community. We vow to continue to do better for us.

Onward and upward,

Sickle Cell 101– The Sickle Cell Nerds

Leave a Reply

Your email address will not be published. Required fields are marked*