November 9, 2015 by Andrea
Photo: CreateHer Stock
1. Be Patient
It's easy to get frustrated with the fact that many people still don't know what sickle cell is, and even if they have heard of it, they may not exactly understand how it works. Take those times when people utter misinformed remarks or when they genuinely inquire about the disease as teachable moments, in which you can impart correct knowledge to them right on the spot.
2. Introduce Them to a Warrior.
Sometimes, the best way to educate the people in your area is to have them hear first-hand accounts about sickle cell disease directly from the warriors themselves. Connect with the Sickle Cell Disease Association of America or your local sickle cell advocacy organizations to obtain information on booking speakers at your next event.
3. Start a Facebook Group.
They're super easy to set up, and you can invite anyone to join. This is a great option for individuals and organizations to spread their message of sickle cell awareness to a large group of people at once. On the Facebook group's page, you can directly answer questions related to sickle cell disease, as well as share information about the latest advancements and breaking news.
4. Develop an App.
If you're tech savvy, consider building an educational app that teaches people all about what sickle cell is and how it affects the body. A mobile app game could be the perfect way to get people interested in learning more about SCD, especially children and adolescents.
Category: Resources for Parents, Sickle Cell Disease Tags: sickle cell advocacy, sickle cell awareness, sickle cell disease, sickle cell educational programs | Comments Off on 5 Easy Ways You Can Educate the Community About Sickle Cell
April 13, 2015 by Andrea
Photo: SCDAA/sicklecelldisease.org
There are only two more days until Sickle Cell Advocacy Day 2015 kicks off! You probably already have plans to hit the Hill and speak with your representatives, meet with other SCD advocates, and even see a little bit of the city while you're there (the Cherry Blossoms are beautiful this time of year!). Before you pack up the car, hop on the train, or board the plane for D.C., here are a few things you should do to prepare.
1. Become an official sickle cell disease advocate. We already know you have a passion for helping people with sickle cell, but if you're not already an official member of the Sickle Cell Disease Association of America (SCDAA), you should definitely join before you arrive in D.C. This way, you'll be sure to stay on top of SCD events, legislative activities, and more that relate to SCD throughout the entire year, not just this one day. Joining is easy: Just e-mail scdaa@sicklecelldisease.org or call them at 410-528-1555, and they'll get you started.
2. Familiarize yourself with the legislative materials. This year, as in other years, the focus will be on the re-authorization of the Sickle Cell Treatment Act, as well as the topics of funding, research, education, and awareness. Look over these materials before you arrive, so that you're familiar with the important talking points you should address when meeting with your rep.
3. Review the agenda. April 15 and 16 will be full of hard work, but also full of fun, so make sure you check the agenda, so you don't miss important meetings and meet-ups. There will be a welcome reception and advocacy training on April 15, the night before your day on Capitol Hill. Then, after your day on the Hill, be sure to attend the "Eat & Greet" co-hosted by Xickle and Dr. Lakiea Bailey, where you can enjoy some good food, network, share ideas, and learn ore about how Xickle can help those with SCD.
What are you most looking forward to doing/attending this Sickle Cell Advocacy Day? Tell us in the comments below!
Category: Sickle Cell Disease Tags: national sickle cell advocacy day, sickle cell advocacy, sickle cell advocacy day 2015 | Comments Off on Before You Arrive: How to Prepare for Sickle Cell Advocacy Day
March 30, 2015 by Andrea
1. Let your voice (actually) be heard. It's cool to share your experiences on social media, join your local sickle cell support group, sign petitions, and write letters to your representatives, but there's no replacement for meeting with your reps face to face. Give them a human face with which to associate the struggles of SCD and the need for more research, better funding, increased awareness, and improved healthcare access.
2. Collaborate with other warriors. Expand your circle of advocates (and friends) by meeting them not only on the Hill, but also during the Sickle Cell Community Consortium's "eat and greet" at 6:30 p.m. on April 16 at the Sheraton Silver Spring. Attendance is free, but be sure to RSVP by e-mailing sccconsortium@gmail.com. This is the perfect place to network and share your advocacy ideas with new people, as well as hear their input.
3. Meet the co-founder of Xickle. Dr. Eric Coles -- the co-founder of Xickle -- will be hosting the meet-up, along with Dr. Lakiea Bailey, and will share more information about Xickle RBC-Plus and the impact it's been shown to have on the red blood cells of people with sickle cell disease. Get to know him and our product and be sure to come with any questions you may have.
4. Get away for awhile. Take a break from your typical routine and use this change of scenery to get inspired, motivated, and reenergized. Get ready to arm yourself with new information and a fresh perspective that you'll be able to take home with you and implement among your own community of sicklers.
Do you plan on attending Sickle Cell Advocacy Day this year? What are you most looking forward to?
Category: Resources for Parents, Sickle Cell Disease Tags: national sickle cell advocacy day, sickle cell advocacy, sickle cell advocacy day 2015 | Comments Off on 4 Reasons You Should Attend Sickle Cell Advocacy Day 2015
September 11, 2014 by Andrea
It’s been more than 100 years since the discovery of sickle cell disease; however, it is still one of the most under-supported and under-researched diseases. Here's how you can help change that.
Category: Sickle Cell Disease Tags: sickle cell advocacy, sickle cell awareness month, sickle cell disease | Comments Off on Dear SCD Community: We’ve Got Much Work to Do
April 9, 2014 by Andrea
©Depositphotos.com/monkeybusiness
The mission of National Sickle Cell Advocacy Day (April 2-3, 2014) is to not only raise awareness and promote more education about this disease, but to also push for more funding and better treatment programs. This year, another main focus was the re-authorization of the Sickle Cell Treatment Act, which was passed in 2003 by President George W. Bush.
But after the crowds leave The Hill and head back to their respective homes, how can you ensure that you do your part in pushing for more government funding for sickle cell research?
1. Contact your senators and congressional representatives. Let your voice be heard and get in touch with your reps about pushing for more funding for sickle cell research and educational programs. To find out who represents your state, click here; you can choose to e-mail, snail mail, or call.
2. Participate in a local sickle cell run/walk. There are several that take place all over the country throughout the year. Simply search the Internet for events happening near you and register. Not a fan of running or walking? No worries -- these types of events always need volunteers, so you can contribute to the cause in that way, as well. If there don't happen to be any run/walks taking place in your area, you can always organize your own. Find out how here.
To get you started in your search, we've compiled a brief list of upcoming events in some cities:
8th Annual Stomp Out Sickle Cell 5K Walk, Saturday, Sept. 20, 2014; Freedom Plaza, Washington, DC
17th Walter E. Brandon Sickle Cell 5K Walk/Run, Saturday, Sept. 27, 2014; Fairmount Park, Philadelphia, PA
Tackle Sickle Cell 5K Run/Walk 2014, Saturday, June 14, 2014; Liberty State Park, Jersey City, NJ
Mark Walden Memorial Sickle Cell 5K, Saturday, October 18, 2014; Autozone Park, Memphis, TN
3. Join a local chapter of the Sickle Cell Disease Association of America (SCDAA). As an advocate with the SCDAA, you'll be put in touch with national and legislative proponents of sickle cell. Through your contacts, you'll be able to help educate the public about this disease and help those suffering from it by staying on top of -- and advocating for -- new programs, services, and research. Click here to find a chapter near you, or e-mail the SCDAA at scdaa@sicklecelldisease.org.
Category: Sickle Cell Disease Tags: sickle cell advocacy, sickle cell disease, Xickle RBC-Plus | Comments Off on Beyond National Sickle Cell Advocacy Day: How to Continue the Call for More Government-Funded Sickle Cell Research
