The SCDAA conference, which just ended this past weekend, is THE major sickle cell disease conference in the country, typically occurring annually this time in October. This four-day event brings people from around the country and beyond to discuss everything sickle disease related. Doctors, nurses, pharmaceutical company representatives, social workers, sickle disease advocates, non-profit organizations, national government healthcare agencies, and sickle cell warriors, converge on one location (often Baltimore, MD or Atlanta, GA) to discuss the current state of treatment, drug trials, industry trends, and current problems plaguing the community. These behind-the-scenes movers and shakers and longtime advocates of the sickle community attend the conference EVERY YEAR, and that is why I think every sickle disease warrior should attempt to go at least once in their life.
Yes Unicorns Do Exist
Sickle cell disease movers and shakers huh? Yes, these people do exist, and as we are the critical component of the community, and reason for the need of a conference, it is crucial that actual sickle cell warriors are in attendance, in mass, so our concerns are heard loud and clear. If we are not at these decision making/informational conferences, then how can we complain about any of the critical choices made for our community at events like these?
No Money, More Problems
I know many in the sickle community will push back, rightfully pointing out the cost of attendance is beyond what many warriors can afford. And finances are a legitimate issue for many with sickle cell, particularly those not working and on SSI or SSD. However, for many in the community, there is an opportunity for a workaround on cost. If you are the member of your state SCDAA chapter (if not you should join asap anyway), they offer first come first serve scholarships to attend (for exact details in your particular state, you can find your local chapter at the national website www.sicklecelldisease.org ). Typically, the cost is only $50. Which includes the conference registration and a two-night stay at the same hotel as the conference. Travel costs are separate and up to you, but some states travel as entire organizations, and that can help reduce costs. It is true food, and travel costs can add up over three days, but it is an opportunity to attend the major sickle disease conference where doctors, social workers, warriors, and pharma companies are all meeting to discuss your disease! It makes sense for even the poorest of us to try to find a way to attend. Sickle cell warriors are frequently told why something can not happen, we live our lives bombarded by artificial boundaries. However, if we want to participate, there are options available to all – one can slowly save money between yearly conferences, request assistance from their church, community organizations, friends, family, or crowdsource fundraising, like GoFundMe to help raise the money for food and travel to be there. The point is, that where there is a will, there is a way. We can always find a reason NOT to do something; it is ALWAYS better to find a reason to do something!
Party For Your Right To Fight
The conference is not just for warriors, it includes many seminars specifically for the medical community. Yes, there is a lot of technical discussions – heavy with medical terminology, but there are also panels that are patient-centric and perfect for sickle cell warriors! Not to mention attending some of the more technical seminars present a chance to learn even more about your disease than you might already know. After the first full day of workshops, the conference has a meet and greet cocktail hour in the evening with food and music. It sets the conference off the right way. The most popular and well-attended daytime event is the Lonzie Lee Jones Patient Advocacy Symposium. Always a fun, educational, and important event to attend if at the conference. There are also numerous luncheons, where networking with peers in a relaxed way occurs naturally. Most significantly, on the last night, there is a beautiful soiree/gala every year where folks dress up, let their hair down and share good food, music, dancing, entertainment performances, and an award ceremony. This year singer and NAACP Image Award winner Jordin Sparks attended as a celebrity guest, and sickle cell warriors model London Knight and actor and SCDAA celebrity ambassador, Dexter Darden, of the Maze Runner trilogy movies, were both in attendance.
You Are Not Alone
The gala is always a pleasure; however, the most important reason a person with sickle disease should go to the SCDAA conference is the networking you get to do with other sickle cell warriors, some, from other parts of the world. Why should others be there, but not you? It’s like folks having a meeting about your family, and you’re not in attendance.
For Us By Us
The conference is about you, and for you, and the SCDAA makes it as financially affordable as anyone can reasonably expect them to. The rest is on the sickle community to show up and show out. This incredible conference happens every year and even if SCDAA didn’t offer the scholarship, paying full price to attend is a valuable, worthwhile endeavor. In all honesty, you owe it to yourself to participate in the conference, even if you can only go once in your life. It is an event that everyone in the community deserves to experience. A chance to be a sickle cell disease activist, learn the latest developments in sickle cell management and research, and party all in the name of your illness, all while getting to meet other warriors, and maybe a celebrity or two. What’s not to love?