SCWs COVID Highs and Lows

COVID Pandemic Lesson: Learn to Flow Like Water

Once the COVID Pandemic and shutdown hit California, it quickly became apparent that traveling to events was going to be off the table for a while. Sickle Cell Warriors, Inc. and other sister organizations in the advocacy sphere, we all had to move quickly, as information and impact was changing rapidly. We started sharing info on our social media pages to connect with our client base, and answer the question, what to do about your SCD in a pandemic.

8th annual Warriors Patient & Family Educational Conference in Las Vegas – Postponed

With our collaborative partners and SCCC, SCW had been planning our 8th annual Warriors Patient & Family Educational Conference in Las Vegas this year. This annual event was a homecoming/educational opportunity for many friends, families, advocates, caregivers, and medical professionals to elevate the conversation of sickle cell disease. Heartbreakingly, we decided to postpone the conference. It was just not a safe proposition. This was the first time we had cancelled a conference, but we were not alone, as it became apparent that many facilities were following the mandate of their local health department and shutting down.

Technology Updates & Website Rebuild

The next thing we did was to turn our entire travel budget into our technology development budget. We made a major technological investment into our website and increased our tech capabilities. We built our website brandnew from scratch. You know I was really attached to our original website because I built it myself…taught myself limited coding and built it one block at a time. But as you know, the site has been problematic for a while now. So the pandemic gave us time to not put a band-aid on things, we did a brand new rebuild. This was our covid-baby…our new website. 

Its been a work in progress, and really has taken the last 4 months just to get to a functional level on the back-end. There was a time I was in a heartbroken panic because I thought we lost our entire library! Fortunately, a friend came to our aid and was able to resurrect all our old files. I’m still working on the new menus. Thank you for your patience and understanding…we’re finally getting things back up and running. 

Our plan is that once we are all set up, Sickle Cell Warriors can offer more original online programming and content elevating more voices from our community. Particularly since our community is full of amazing BIPOC minorities, who are doing amazing things. I can’t wait to raise our next Warrior in the Spotlight.  This fulfills our mission objective of : Education, Awareness and Advocacy for sickle cell disease.

Sickle Cell Warriors, Inc. will curate, produce, and create exclusive digital content on multiple tech platforms. Digital tele-conferencing live stream events, innovative sessions, and  research summits online, and 1:1 hangouts than before. Visit the Events calendar on Facebook for all the details.

COVID Stimulus Package – SCW Did Not Qualify

Originally when the stimulus cheques came in, like all businesspersons, we were excited. But we found out quickly that they did not have a line for nonprofits. A few weeks later, the government realized this, and did provide a section under the Business Owners section. However, this only covered reimbursement of salaries of employees, and our financials were too limited to qualify. As you know, we run a lean budget, and majority of our staff are volunteers. We do this to ensure that every dollar that is donated impacts the patients and families living with sickle cell disease. Uncle Sam could not save us, so we had to save ourselves. We got creative to ensure we kept up our services and still functioned at optimal capacity.

2020: A Year Never Seen Before, and Unlike Anything that Ever Has Been

In June, 2020, Sickle Cell Warriors©, Inc. held a fundraiser, when it became apparent that the circumstances of living in a post-COVID world had begun to impact our patient and family communities of over 25,000, from all over the world, BIPOC, and minorities.  Through the generosity from all the donors during the World Sickle Cell Juneteenth Fundraiser,  we were able to help families directly with what they needed at the moment. For some it was masks, for others it was internet. We did our best to handle the big stuff as well as the little stuff. Our staff maxed out our Patient Support budget as we went from one request to another. We were inundated with different requests, and we just had to hunker down and power through, doing what other nonprofits were doing to survive through the pandemic.

Sickle Cell Warriors COVID Impact Survey

To better understand the complexities of our patient base, in August, we developed the first Sickle Cell Warriors Covid Pandemic Impact Study. With this tool, our aim is to better pinpoint the areas of need for our community. This will aid us in developing initiatives and programs that focus on helping patients and families through this time. Check out the survey HERE.

September is for Sickle Cell

It’s our Month! Our time to Shine! #SeptemberIsSickleCellAwarenessMonth! There is so much happening in the community. At SCW we typically take this time as our ‘off’ month, but because I the pandemic, we are so on baby!

Sickle Cell Warriors 1st Annual Education Scholarship

We have some amazing gifts for the community. The first is the 1st Annual Sickle Cell Scholarship for warriors pursuing their education. The application form is HERE. Anyone can apply, this is a global scholarship. We also made sure the form was simple. Registration closes on September 14, 2020, so apply today. The selection committee will have 1 week to consider and we will announce the winner(s) before September is up.

Mental Health Initiative

To better support our community, especially during this time of pandemic stress, racial tension, and political drama, its so hard to add anything else to the plate. Our self-care often gets dumped at the wayside as we experience all these emotional highs and lows. If our team was struggling with emotional burnout, it stands to reason so was everyone else in the community. So we put the question to the warriors, and got the feedback we needed to develop our next initiative. Sickle Cell Warriors has partnered with an amazing licensed psychotherapist to provide group counseling sessions. With the shortfall from our last fundraiser, we are able to provide 8 group sessions a week, and its free! We have a class for Parents, Spouses, Warriors, Newly Diagnosed and those undergoing or interested in bone marrow/gene therapy. We have a class for everyone! Read more about it HERE and sign up HERE.

Sickle Cell Drug Therapeutics Live-Stream

Sickle Cell Warriors is proud to announce that for the FIRST TIME EVER!!! We will be able to stream the conference right here on our website. We are proud to have partnered with Global Blood Therapeutics (4th time!)  and will livestream SCDTC conference on September 15th. This live feed will be on our website, facebook page and our Youtube page. You can pre-register HERE to get reminders directly from SCW. Starts 9am EST. More updates to come.

Lessons from COVID

The pandemic blessed us in that we now have more tech abilities, more programming, more live sessions, and more connectivity. Yes, we don’t get to hug you or see you in person, but we still get to connect with you. We are still here for you. We can still support you. In fact, I think many of you have seen us more this year, not less! The main lesson that we as an organization have learned is to flow like water. Water changes its form, can change to Ice, to Steam, to Vapor…but at the end of the day, it’s still water. It can take the shape of whatever you place it into, but its still water. If I can give you a message that will guide you through this season…flow like water my warrior brothers and sisters. Flow like water. Be well, stay safe, stay blessed. ~Tosin.

SC Warrior