The March for Science -- which saw protesters all over the world stand up against the Trump administration's "alternative facts"-driven outlook on the discipline -- took place on Earth Day (Saturday, April 22, 2017). And while the majority of the march's focus seemed to center on climate change, the Flint water crisis, and wildlife protection, scientific research of all kinds is championed by the marchers, supporters, and activists.
That includes research and advancements for sickle cell disease.
This new week post-march is one of continued action and provides the perfect opportunity to further awareness of SCD, starting with today (Monday, April 24), in which the theme is "Science Discovers." The march's website provides various ideas on how to participate in this first day of action: promote science outreach, plan a science game night, and get others involved. Building upon the March for Science's suggestions, we've got a few thoughts on how you can tailor your first day of action -- and the rest of the week's -- to be sickle cell-specific:
1. Plan an informal teach-in (or series of teach-ins) at a local school, church, or community organization to be held in the near future. Partner with a nearby chapter of the SCDAA or other similar group to bring in experts and speakers.
2. Suggest that your book club choose a sickle cell-themed book for your next selection, and come to the meeting ready to discuss what you've all learned, and brainstorm ways you can support the community.
3. Create your own SCD-themed card game or board game with family and friends. Then, host a game night to actually play your newest masterpiece. It's a fun way to educate yourself and others you know about sickle cell. Check out this list of science-related games for inspiration on developing your own.
As you work on those ideas and begin the planning process, keep the other days of action in mind, too, and implement more activities and programs so that your year is full of activism and awareness.
It's been two years since we first announced we'd be launching clinical trials for SCD-101, the drug equivalent of our supplement Xickle RBC-Plus. A necessary part of our journey toward FDA-approval, the initial phase of our clinical trial has already demonstrated the effectiveness of Xickle on patients with sickle cell disease.
In fact, in the December 2016 issue of Blood, the American Society of Hematology’s weekly medical journal, an article was published illustrating the initial successes of our trial. The feature, “SCD-101: A New Anti-Sickling Drug Reduces Pain and Fatigue and Improves Red Blood Cell Shape in Peripheral Blood of Patients with Sickle Cell Disease,” points out that participants in phase one of the trial not only showed reduced occurrences of cell sickling, but also reported an increase in exercise ability, as well as improved sleep and ulcer healing, leading the researchers to conclude that SCD-101 is a “promising new drug for the treatment of sickle cell disease.”
Fast forward a few months, and because of the success of the initial round, we are now preparing to enter the next phase in our dose-escalation study: a randomized, double-blind, placebo-controlled crossover. Here’s how it’ll work: Participants will be randomized to two treatments—placebo and SCD-101. Some will receive 28 days of the placebo first, followed by 28 days of SCD-101, while others will receive the drug first, followed by the placebo. This method helps compare the two treatments using a relatively small sample size. To ensure accuracy, a 28-day “washout” period—when clinical trial participants are completely taken off a study treatment for a set amount of time—will follow each 28-day treatment period. This just guarantees that there will be no “carry-overs” or leftover effects of the first treatment into the second one.
This next phase of the trial will continue to test the safety and effectiveness of escalating doses of SCD-101—things like changes in sleep and exercise activity, pain incident and pain reliever usage, fatigue symptoms, and of course, sickling frequency. We expect to continue to see positive reactions from sickle cell warrior participants.
The best news, though? While FDA approval for the official drug development of SCD-101 may take another four years, you can purchase and use SCD-101 in its supplement form, Xickle RBC-Plus. With no known toxicity, Xickle helps prevent sickling in both children and adults. Why wait to get started?
For even more info on Xickle RBC-Plus/SCD-101, check out the video below:
A new awareness event that will benefit sickle cell disease, among others, is set for November 15, 2017. This event, the first-annual World Cord Blood Day, seeks to educate the public about how stem cells taken from blood in the umbilical cord is a non-controversial method of retrieving and using stem cells to treat dozens of diseases, including SCD.
According to a recent press release from Save the Cord Foundation, the event's organizers, more than 35,000 cord blood transplants have been done all over the world since 1988 and have treated 80-plus life-threatening diseases -- sickle cell being one of them. Research relating to stem cell transplants of this kind show that the transplants work best when the cells come from a relative (although research relating to donor stem cells is pushing along and has worked in some cases). The thing is, saving cord blood is literally a once-in-a-lifetime opportunity, as it must be done at the time of birth. World Cord Blood Day will help make people aware of how important it can be to save and bank this resource.
"We are truly excited about this opportunity to expand cord blood education worldwide while providing a platform for discussion focused exclusively on this valuable medical resource," Charis Ober, Executive Director of Save the Cord Foundation, said in the press release.
So far, partners for this premier event include the Cord Blood Association, Be the Match, the World Marrow Donor Association, the American Association of Blood Banks, and the Foundation for the Accreditation of Cellular Therapy. Participation in the very first World Cord Blood Day is easy: You can sign up to learn about events near you, attend the free virtual conference, and/or join in the discussion on social media using the hashtag #WCBD17.
Another movement to help raise awareness about sickle cell treatment and other diseases? That's a definite win.
Artists find inspiration in various things and places -- love, nature, beauty, and personal experiences, just to name a few. Seventeen-year-old Panteha Abareshi draws on the latter; more specifically, she channels her sickle cell pain into her art.
Diagnosed with sickle cell disease -- sickle cell beta-zero thalassemia to be exact -- at two years old, Panteha understands what it's like to live with acute, chronic pain and have an intense need to escape that pain, even just a little bit, however possible. When her health took a turn for the worse in the fall of 2014, Panteha found herself in the hospital regularly. She was in so much pain that she could only move her hands and her arms. In the new short film, The Girl Who Loves Roses, by The FRONT, Panteha tells of how in that moment, she asked her dad to hand her a sketchpad. She began drawing images of women of color expressing pain, struggle, and overall femininity. "I would create alternate realities that I could take myself to to explain why I was in the hospital or to make it somewhere I wanted to be, rather than somewhere I had to be," she shares in the film.
Besides a way to cope with her physical and mental pain, Panteha also uses her illustrations as a way to increase the representation of women of color in the art world, especially when it comes to women of color with mental illness and chronic illness, both of which Panteha struggles with. On March 30, her artwork, along with the short film, went on display at Larrie, an art gallery in NYC's Chinatown, and according to Paper magazine, the show will be around for two weeks, as part of pop-up art show highlighting Panteha's works.
Check out the short, behind-the-scenes film below and continue scrolling to see a few samples of the art she has created.
