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?
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4 Reasons You Should Attend Sickle Cell Advocacy Day 2015
March 30, 2015 by AndreaCategory: 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
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How You Can Help Make a Difference: 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)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
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Meet Cesear Sant: Sickle Cell Warrior, Child Prodigy
March 16, 2015 by Andrea
Photo: GoFundMe
Even the youngest of sickle cell warriors don't let their disease stop them from greatness. Take 5-year-old Cesear Sant, who lives in Winston-Salem, North Carolina with his family. At the age of 4, he had his first acute stroke. Over the next year and a half, he had two more -- some of which left him unable to walk or talk for awhile.
This amazing little boy doesn't allow sickle cell to define him, though. He is also blessed with an immense talent for playing the violin, and as his father told NationalGeographic.com, "Since early on, you see he loves music. Music is the most important thing ... I'm always saying that the violin helped save his life." Considered to be a child prodigy, Cesear, at just 5 years old, is able to play Vivaldi's Violin Concerto in A Minor -- something that his own violin teacher couldn't play until she was 12.
Watch Cesear's entire story here. And, to contribute to his bone marrow transplant fund, visit his family's Go Fund Me page.Category: Chronic Health Conditions in Children, Sickle Cell Disease Tags: cesear sant, cesear sant violin | Comments Off on Meet Cesear Sant: Sickle Cell Warrior, Child Prodigy
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Another Milestone in Our Quest for FDA Approval
March 9, 2015 by Andrea
Just three months in and already 2015 has been off to a good start for Xickle. In January, we announced plans for a clinical trial; in February, we published a brief preview of our research; and this month, we've not only been a part of an amazing sickle cell-centric radio show, but now, we're excited to share that our clinical trial has officially been published on clinicaltrials.gov!
To summarize, our clinical trial is studying the safety and clinical effects of SCD-101 (the drug equivalent of Xickle RBC-Plus) in adults with sickle cell disease. Effectively identical to Xickle RBC-Plus -- it's made in the same plant, by the same process, and bottled by the same company -- SCD-101 "inhibits sickling of red blood cells containing Hb S (sickle hemoglobin) under low oxygen conditions ... SCD-101 may inhibit red blood cell sickling in patients with sickle cell disease and reduce symptoms and slow disease progression."
We believe so strongly in our product and have seen how it has positively affected our current users, so this trial is quite significant since it's bringing us one step closer to FDA approval, ultimately giving us solid credibility as a treatment for SCD. While we work through the approval process (which can take 4-6 years), we will continue to offer Xickle RBC-Plus as a supplement via our website.
To learn even more about our current clinical trial, including criteria, outcome measures, and important dates, read more here -- and of course, spread the word!
Are you excited about this clinical trial? Have any questions? Tell us in the comments below!Category: Clinical Trials, Sickle Cell Disease Tags: clinical research, clinical trials, FDA approval, innovation, patients, Red Blood Cell Health, sickle cell disease, technology | Comments Off on Another Milestone in Our Quest for FDA Approval
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Sickle Cell on the Radio: Why You Should Tune In
March 2, 2015 by Andrea
In case you missed it, Farron Dozier, sickle cell trait and sickle cell disease advocate, will be relaunching his popular radio show this Wednesday (March 4, 2015)! Using his broadcasting platform, Farron will be helping to increase education and raise awareness for SCT, SCD, thalassemia, G6PD, lupus, and other conditions. An Army veteran, Farron first discovered the symptoms of his own sickle cell trait back in 2006, as he was participating in his physical fitness test. Since being medically discharged from the Army in 2013, Farron has made it his mission to inform the pubic about sickle cell, remove the stigma, and cultivate understanding of the disease.
Tune in to LA Talk Live every Saturday at 4 p.m. Pacific Time/ 7 p.m. Eastern Time, and join in this important conversation. Then, revisit this post and tell us what you think about his show in the comments below!
While you wait for the official relaunch, be sure to check out his last episode of Season 1 below!.
Category: Sickle Cell Disease Tags: Farron Dozier, LA TalkLive sickle cell, sickle cell disease, sickle cell trait, Whatz Da Count | Comments Off on Sickle Cell on the Radio: Why You Should Tune In
