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
March 23, 2015 by Andrea
CC BY-SA 2.5 via Wikimedia Commons - F.Malotaux
If you live in the DC area -- or you're planning to make the trip for this year's Sickle Cell Advocacy Day (April 15-17, 2015) -- here's how you can join with other warriors, caregivers, and supporters to campaign for the cause of SCD.
It's time for Advocacy Day on Capitol Hill. This is our opportunity to come together with one unified voice and advocate for those living with, conquering and overcoming sickle cell disease. We need your voice!
To join us:
1. Register via Eventbrite.
2. Receive confirmation and the names of your legislative representatives.
3. Make Hill appointments between 10 a.m. and 4 p.m. on April 16 with your senator and congressional representatives.
4. RSVP to attend the Sickle Cell Community Consortium's advocates meet-up on April 16th at 6:30 p.m. by e-mailing sccconsortium@gmail.com. The meet-up will be held at the Sheraton hotel in Silver Spring, Maryland.
Need help making your Hill appointments? The SCCC is available to help! Just contact them at SCCConsortium@gmail.com.
Agenda:
April 15th - Check into Sheraton Silver Spring
April 15th - (6:30 p.m.- 7:15 p.m.) SCDAA reception
April 16th - (7:15 p.m.- 8:45 p.m.) and Advocate Training.
April 16th - (9:00 a.m.-10:30 a.m.) Hear from our legislative champions
April 16th - (10:30 a.m.-until) Hill visits
April 16th - (6:30 p.m.-8:30 p.m.) SCCC advocates meet-up (food served)
SOURCE
Category: Sickle Cell Disease Tags: capitol hill sickle cell, sickle cell advocacy day 2015, sickle cell community consortium, sickle cell disease | Comments Off on How You Can Help Make a Difference: Sickle Cell Advocacy Day 2015
