Starting a Sickle Cell Movement in Your ‘Hood


For those of you that want to be proactive to start a sickle cell movement in your community, it is not as hard as it seems. There are various avenues, depending on what type of group you want to create. Here are a few steps to get you started.

  1. Research whats already in your neighborhood: As I was doing research on the various sickle cell organizations, I realized that sometimes, these groups were mere blocks apart from each other. Instead of serving the same community and becoming territorial,or going in different directions and not reaching a grand destination, combining forces in this instance could be a great asset. So I suggest you to Google what is already in your state or town, and visit the group, to see if you can benefit from them and if they can benefit from you. Some groups were started years ago, and the person at the helm is older and needs a younger person to take the load off. You never know, you might be instrumental in waking up a group that is in your neighborhood.
  2. Decide what to do: This is often the hardest part. There is such a great need for every type of function with sickle cell. Will your group focus on  testing, advocacy, fund-raising, activities support, social?…It’s such a long list and can be hard to decide. It’s better to start with one goal, and then branch out from there as you get resources. If you pick up too many things in the beginning, it will be difficult to juggle all the branches, and this can lead to burnout and fatigue. So start with just one or two things, and as your group grows, you can branch out more.
  3. Get Organized: You need to decide what the name of your group will be. Where is it located? What is your contact info? What is your mission and vision for the organization? How will you raise money? You need to get flyers for promotion. There are many sites that offer flyers for real cheap, and you can design something on Microsoft Word or Publisher that will fit the bill (if you are computer savvy).
  4. Get Online: This is the phase that you develop a website, Facebook page, Myspace, Meetup, Twitter or blog. In this day and age, you need some sort of online presence so that prospective members can easily find out basic info about your group.
  5. Get Members: Although you want to start something, you need at least one other person to help you. In this case, your family and friends are your greatest tools. They can help you get the word out about your new group, and even serve to help you plan and organize activities. Some great ideas to get members are to print flyers and put them out in the local hematology offices and family medicine offices. You will have to ask for permission to have your flyers out. You can get cheap flyers online. Put some in church lobbies, volunteer organizations, the blood bank, hair salons, barbershops, the video store etc. and anywhere that you think people with sickle cell might see it. Advertise on Craigslist, Meetup, the PennySaver or anywhere on the internet. Most of the time, it’s word of mouth that gets things moving, so you should design a flyer that talks about your group, with contact info that Aunty Marcie can see at the post office, and tell her niece that has sickle cell. Be sure to create a database of the contact numbers or emails of members that contact you. This way you can stay in touch with them.
  6. Plan an event: It could be something simple like a Meet&Greet at a local coffee shop, or a picnic at the park. Notify all the members of the upcoming event. Pick a date and time that will be most conducive to people that have jobs or are in school (usually a weekend afternoon). Start with something inexpensive or free, so that there is no pressure on those that are financially soluble. My first Meet&Greet was a game night that I hosted at my house. We played Taboo and talked, and that was the beginning of a beautiful friendship and support group.
  7. Keep Going: From that first meeting, you can decide what direction you want your group to take. Decide who the key members are, and even plan your organizational chart. You can set up some ground rules, and get everyone’s contact information. You can even take it a step further and plan your next meeting, or start throwing ideas around for your next event. Make sure you meet regularly (no less than once a month). Stay in touch with all your members to keep the communal spirit going.
  8. Be the Leader: Realize that not everyone is going to have the same purpose and goal as you do, but that is why you are the leader. So play your part: encourage others, build the team, and keep the group alive and active. You should read up on team building ideas and learn how to be a good leader. Be flexible, understanding and open. Learn how to deal with opposing ideas and conflict. Many times, the main thing that fragments a group is conflict form opposing ideas. Try to keep everyone aligned with the goals that were laid out in the first couple of meetings.

Okay, you have no more excuses. Get up, start researching and start your own sickle cell group today. Not tomorrow. TODAY!


  1. hello
    i was in a dilemma, i want to start an awareness group, but i was start, so i googled and landed on your site, thanks guys for the great work you are doing
    iam in Uganda East Africa and there is alot to be done. please advice


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