We often get many questions about the organization. As we have grown and have gotten new members, the suppositions and opinions have also grown. We often don’t respond to conjecture, gossip, or rumors, but here are a few facts to help set the record straight. Hopefully, it will give you some more insight into the organization.
- We are small but growing. The group started first as a blog located at www.sicklecellblog.blogspot.com (yes it’s still up). Founder Tosin was in the hospital and isolated, so she searched for a blog. This was back in 2005 and the few blogs she found weren’t updated regularly. So she started her own. In months this small blog of one person’s opinion grew. In 2009, the website was started at www.sicklecellwarriors.com. The website is still active, updated weekly, and we have over 600 articles and posts on there. We don’t buy followers or boost our postings (money is better spent on more important initiatives). Other organizations might do that to create fictitious numbers, but we have no need to. We have members from all over the world. My mom (who lives in Nigeria) was telling one of her students about Sickle Cell Warriors, and the student said, “Oh, I already know about SCW, I’m a member.” That is how big our impact is, and we envision it to keep growing. We have the highest number of insights, most “People Talking About Us”, and vibrant conversations on each post. This means that we are legitimately 11,300+ strong and the largest patient-run organization for sickle cell disease. We tend not to toot our own horn but hopefully this will dispel any further murky myths about it.
- We have no exclusivity clause. If you are a member of SCW, you can still be active in other organizations. The Facebook page grew because of the need for a space where people can share their experiences with sickle cell disease. Fortunately now there are many other groups and pages, so each person can find a home where they are welcome and feel supported. The more active each person impacted by sickle cell disease is, the more engagement we can achieve. So please, don’t feel bothered telling me that you visit other sites. In fact, I expect each member to participate in other groups and sites (hey…I do!). We can’t serve all the needs of everyone, and it’s better to find all the support you need.
- We are not in this for the money. The organization and all is activities is funded straight out of our hearts and pockets. We both have full time jobs and careers, and don’t draw compensation in any form from this endeavor. SCW exists because there is a need for such an organization in the sickle cell community. Any donations receive are poured directly into the organization, and support mission objectives. If you would like to learn more about how monies are spent, you can view our transparent financial policy HERE. Although we do love to attend every sickle cell event and opportunity, we cannot because we can’t afford it. We pay for our own flights, hotel, and food while on the road; unless on the rare occasion that we have a sponsor contributing. So when you see us, know that it took a lot for us to be there, and if you don’t see us, support us financially or pray for us that we have the finances to attend the next event.
- We believe in courtesy and respect. We know that those with sickle cell often have horrible experiences in the outside world, so we expect our communities to serve as a safe haven for members. We do have a very strict set of Community Guidelines, but most people find that as long as you are respectful, and do not abuse the page/members/or site, everything flows smoothly. Respect breeds respect. Thus, if you want to use our logo in your own materials, ask us. If you want to copy a post from the site, ask us. If you want to print our media, ask us. If you want to share some news or post that may violate the Guidelines, email us first. It’s the courteous thing to do.
- We are product neutral, and apolitical. This means that we choose not to take a side against or for any product, organization, or political cause. Our cause is sickle cell and we do everything to advance and support sickle cell disease worldwide. We do not endorse any products, and have no plans to do so. However, we do share news to the community of current research, initiatives, events, groups, and programs that affect the sickle cell community. You are encouraged to learn about these, investigate on your own, and make an informed decision yourself.
- It’s just the 2 of us at the helm. For now. We are 24,000 strong and growing daily, but all the administration and management is done behind the scenes, with a few dedicated (but unpaid) volunteers. Everything that has happened and will happen is because of this dedicated team. Obviously we are not large enough to handle the complex needs of this rapidly growing organization. So if your request or need is not being met, consider joining the team. The more helpers we have, the better we can serve the community.
- We are Learning. Neither of us have business knowledge or acumen. Tosin is a registered nurse and Lakiea is a scientist. So put that together and you get two nerds who are just passionate about sickle cell. Everything we do we had to learn ourselves. We read vociferously, built the website by ourselves, and taught ourselves aspects of business management. So please, cut us some slack; it’s a huge learning curve, and even with our dedication; we still need knowledge from accounting, finance, fundraising, lawyers, public relations, marketing, and professionals to turn this organization into a well oiled machine. If you have the expertise, please consider volunteering.
- We love feedback. We don’t know everything, and we can’t do everything, so we need your input to make this a better organization. Feel free to send advice, suggestions, encouragement (trust me, we need it), and tips to firstname.lastname@example.org
- We all have sickle cell disease. This means that we are dealing with its complications and issues just like you are. We are in the trenches, feeling the pains, fatigue, and impact just like you are. And through it all, we still stand. Even on the days that I feel like giving up, I’m reminded of why SCW is important to the community, and I invariably am encouraged by someone else to keep pushing.
- We are human. It’s not a corporate machine behind SCW. We are people, just like you. We have sickle cell, just like you. We cry, we love, we pray, we laugh, we stress, we live, we hurt, we are sick, we have hearts. Even though you may not understand everything that is going on behind the scenes, just trust that we have your best interests at heart, because we are you and you are us.
- We support the sickle cell community. SCW exists to serve the community and not the other way around. We are not in competition with any other groups, and don’t feel threatened by a new voice or entity in sickle cell. Our core belief is that the more groups and activity there is, the better it is for the sickle cell community as a whole. So if you have the desire, passion, and ability to do something for sickle cell disease DO IT! We all must do our part, and sitting around complaining doesn’t get the job done. If you see a need that is not being fulfilled, it may be that you are the person that is meant to fill that space. You can join us and help SCW, or you can start your own mission. Either way, we are all in this together…it’s not a statement, it’s a fact. We have a list of partners and groups that we have aligned with to accomplish the mission, and this list grows longer and longer each day. So there is no need to fear that we are out to get you or go against you. We believe that the more people in sickle cell advocacy, the better. So if you are new to the sickle cell advocacy world, WELCOME! If you have been here for a while and we’ve never met, WELL DONE and KEEP ON PUSHING! We look forward to the day when we can all work together.
- We are in service. SCW exists to serve the sickle cell community. That is all. Our mission is to raise awareness on sickle cell, educate, empower, advocate, and serve until sickle cell disease is no more. Read more about our mission statement here. All the other drama, BS, and political shenanigans, we choose to ignore and not get involved. Anything that can detract us from our focus is a waste of time and energy. Our focus is on sickle cell disease.We will continue serving, fighting, and laboring until sickle cell disease is a thing of the past. We can’t do this without your help.
If you are in the reading mood and want to know more, please visit the website.