Every year, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act must be renewed, and on July 25, 2018, the U.S. Senate Committee on Health, Education, Labor, and Pensions (HELP) approved bill S. 2465 to go to the full Senate for consideration and approval.
Sponsored by Reps. Cory Booker and Tim Scott, this companion bill to HR 2410 will allow the Department of Health and Human Services to study SCD (and other genetic blood disorders) and gain a more accurate picture of how many people are truly affected. According to a press release from the Senate HELP committee, we know about 100,000 Americans are sickle cell warriors. However, there may actually be more -- there's not yet enough data to know. In addition to collecting more of this data, the bill will also encourage the development and implementation of more treatments to help patients with these disorders live healthier lives.
Before this bill can become law, though, it must be passed by the Senate, the house, and then, signed into law by the president. To help ensure all these milestones are successful, it's imperative to contact your senators repeatedly. Click here to find out who your reps are, and then, call them, e-mail them, tweet them -- let them know you will hold them accountable.
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Your Help is Needed to Ensure the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018 is Signed Into Law
July 31, 2018 by AndreaCategory: Chronic Health Conditions in Children and Adults, Sickle Cell Disease, Sickle Cell Education Tags: senate help committee, sickle cell, Sickle Cell Disease Research Surveillance Prevention and Treatment Act | Comments Off on Your Help is Needed to Ensure the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018 is Signed Into Law
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Phi Beta Sigma and the SCDAA Have Partnered to Raise Awareness and Funds for Sickle Cell Disease
July 17, 2018 by Andrea
Photo for illustrative purposes only
A couple of months ago, The Links Foundation, Inc. donated $1 million specifically for sickle cell research to St. Jude Children's Research Hospital. And just 10 days ago, another prominent Black nonprofit -- this time a Greek organization -- announced its partnership with the Sickle Cell Disease Association of America.
The members of Phi Beta Sigma Fraternity, Inc. see themselves as "a brotherhood of conscious men actively serving our communities," and as part of that this year, they'll be working alongside the SCDAA to help raise awareness of sickle cell disease and its trait and help raise funds for related research.
Their first official act will be joining in on the SCDAA's 5th Annual National Sickle Cell Walk with the Stars & Move-a-Thon on August 18, 2018 at Baltimore's Canton Waterfont Park. After that, Phi Beta Sigma will continue its partnership by helping organize bone marrow and blood drives, as well as educating their communities and assisting with fundraising.
"Phi Beta Sigma understands the deep impact that sickle cell disease has on our communities," the frat's international president Michael Cristal said in a press release on sicklecelldisease.org. "We are excited to lend our efforts to raising funds for this important cause."
The Walk/Move-a-Thon is open to everyone, so if you live in the Baltimore area and you'd like to participate, sign up to do so here.Category: Fundraising, Sickle Cell Education Tags: phi beta sigma, SCDAA, sickle cell | Comments Off on Phi Beta Sigma and the SCDAA Have Partnered to Raise Awareness and Funds for Sickle Cell Disease
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There’s Finally a Podcast Dedicated to Sickle Cell
June 26, 2018 by Andreahttps://www.instagram.com/p/BkTGTamA3im/?taken-by=sicklecell101
Two years ago, we discussed the lack of podcasts centered on sickle cell disease and wrote about how launching your very own is a great way to raise awareness of SCD all year long. A couple years later, and there's still a void on the this subject in this space. But, as of this past World Sickle Cell Day, one group set out to help change that.
Sickle Cell 101, a nonprofit organization that focuses on sickle cell education through social media, launched their podcast on June 19, 2018. Hosted by Cass and Stephen -- a sickle cell warrior and founder of Sickle Cell 101 and a pharmacist and sickle cell trait carrier, respectively -- the inaugural episode covers the current state of sickle cell across the globe and touches on topics, such as what sickle cell is and how it is inherited, how sickle cell warriors can best take care of themselves, the stigma associated with warriors and pain medications, the misconception some have that sickle cell is witchcraft, and more.
As an organization, Sickle Cell 101 also gives out annual Sickle Cell Advocates of the Year awards and hosts an HBCU sickle cell college tour. We're not sure how often new episodes of their podcast will air, but be sure to follow them on Twitter and Instagram for updates.Category: Sickle Cell Education Tags: sickle cell, sickle cell 101, sickle cell podcast | Comments Off on There’s Finally a Podcast Dedicated to Sickle Cell
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How to Raise Sickle Cell Awareness 365 by Starting a Book Club
June 18, 2018 by Andrea
Tomorrow is World Sickle Cell Day, but the only way to truly make an impact on SCD awareness is to make the efforts ongoing. We've shared a lot of ideas over the past few years about how to do just that, and in celebration of WSCD 2018, we're comin' at you with another one: Start your own book club.
But not just any book club. Fill your reading list with sickle cell-related fiction and nonfiction and your membership roster with warriors and non warriors. We've even compiled a few selection options to get you started. Once you've settled on those preliminaries, it's time to solicit input from founding members to decide how many people you'd like to have in your club and how often you all should meet. Will you gather monthly? Quarterly? Bi-monthly? Who will host each meeting and where? Will you rotate members' houses or meet in a public place? How will you determine what books to read next?
To kick things off, the book club's founder can select the first book; or, they can send a survey with a narrowed down list of choices to current members, and read the winning pick. Then, when it's time for the first meeting, that session's host/hostess can lead the group through spirited discussion, keeping the following topics in mind:
1) Overall thoughts on the book
2) How effective the book was conveying its message
3) Whether anyone learned anything new
4) Themes/motifs, etc.
Picking up a book club journal will help with discussion, as well as provide a fun record of all the books you and your group read, making it easy for everyone to share recommendations with friends and family.
For more information about book clubs, check out the website for National Reading Group Month. The actual month is October, but this resource is available 365.Category: Sickle Cell Disease, Sickle Cell Education Tags: book club, sickle cell awareness, world sickle cell day | Comments Off on How to Raise Sickle Cell Awareness 365 by Starting a Book Club
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Houston Teen Starts Nonprofit to Raise Awareness for Sickle Cell Disease
May 15, 2018 by Andrea
Photo: haileykisses/Instagram
Hailey Fields is more proof that when it comes to making a difference in the world, it doesn't matter how old you are. Only 13, this eighth grader already has a multitude of accomplishments under her belt -- model, actress, beauty entrepreneur, and nonprofit CEO. The latter was inspired by her grandmother Gale, who passed away from complications of sickle cell at the age of 64, just five months ago.
Covered By The Blood, Inc., Hailey's nonprofit, was established in 2016 with the goal of helping to raise awareness of SCD and helping to assist families of sickle cell warriors with financial assistance as needed. "Not a lot of people know what sickle cell is," Hailey said in a recent interview with Houston Life. "I know I didn't know about it, so I'm like, I wanna teach other people to know about it."
Before launching, Hailey did her research on sickle cell and on what it takes to start a nonprofit, and then, approached her mom with a business plan. Her mom invested in Hailey's dream, and since then, through blood drives, donations, and the help of volunteers, the Covered By The Blood crew has been able to support families in their community impacted by sickle cell. Profits from her Hailey Kisses lipsticks and glosses line also go toward her nonprofit.
Learn more about Hailey and Covered By The Blood here, and if you'd like to join their team, sign up to donate, volunteer, or host a blood drive.Category: Sickle Cell Disease, Sickle Cell Education Tags: Covered By The Blood, Hailey Fields, sickle cell | Comments Off on Houston Teen Starts Nonprofit to Raise Awareness for Sickle Cell Disease
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Best Friends Capture the Real Face of Sickle Cell with New Documentary, “Spilled Milk”
March 5, 2018 by Andrea
Instagram/spilledmilkdoc
We always hear platitudes about how you don't have to be rich or famous or a certain age to make an impact on people's lives -- and Jaqai Mickelsen and Omar Beach are proving that to be true with their new documentary "Spilled Milk."
Best friends since the early '90s when they met in high school, the duo didn't realize how Jaqai's love of video cameras would come into play in their lives down the road, using it to document, and ultimately share, Omar's sickle cell journey. About six years and more than 40 hours of footage later, their 84-minute documentary, which can be viewed free of charge here, "takes an intimate look at Omar's everyday life and explores the harsh realities of Sickle Cell [sic], the effects of which extend beyond the significant physical impact of the disease," states their website.
It's one thing to have knowledge of the disease and how it affects the people who live with it and a totally different thing to actually see the effects on a real person in real time. From the opening scene, viewers are hit with just how real the struggle can be for sickle cell warriors. We see Jaqai and his wife sitting in their car as Jaqai relays to her that Omar's mom has just informed him that she found Omar unresponsive and bleeding through his mouth; an ambulance is on the way.
Interspersed with footage from their teen years; Omar's hospital stays; and interviews with sickle cell doctors, psychologists, and the best friends' own friends and family, Jaqai and Omar's "Spilled Milk" really gives a full picture of Omar, the person, to share his complete story while raising awareness for SCD at the same time.
Watch the full film here, and donate to support the documentary:
Category: Sickle Cell Disease, Sickle Cell Education Tags: jaqai mickelson, omar beach, sickle cell, spilled milk | Comments Off on Best Friends Capture the Real Face of Sickle Cell with New Documentary, “Spilled Milk”
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Online Community Just for Sickle Cell Warriors Launching Soon
November 28, 2017 by Andrea
Photo: Twitter/oneSCDvoice
A new site aimed at providing not only sickle cell-related news and resources, but also a means of safely connecting to others in an online community is launching next month. The brainchild of parent company RareLife Solutions, oneSCDvoice is "an educational platform that gathers credible disease and lifestyle information to empower people impacted by SCD."
Pre-registration for this online community is already taking place, and it's completely free. According to oneSCDvoice's website, your registration will unlock a library of trusted sickle cell resources, clinical trial news and updates, and a "SMART Social Wall" where you can communicate not only with other warriors, but also with caregivers, researchers, advocates, and more.
OneSCDVoice is RareLife's flagship platform, so it's probably safe to say that if all goes well with this launch, we can expect other online communities for other rare diseases to come along in the near future. "We look for the solution where it may not already exist," RareLife states on its site. "We build things to fill voids, we listen, watch and learn for insights and opportunities to truly be of service to people impacted by rare disease."
Have you signed up for oneSCDvoice yet? What are you hoping to gain from using this platform? Tell us in a tweet (@XickleRBC)!Category: Sickle Cell Disease, Sickle Cell Education Comments Off on Online Community Just for Sickle Cell Warriors Launching Soon
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“Motown 25” and Its Contribution to Sickle Cell Awareness
September 11, 2017 by Andrea
Giphy
Here's a sickle cell awareness fact you may not have known: "Motown 25" -- that epic night back in 1983 of A-list performances from Michael Jackson, the Temptations, The Supremes, Lionel Richie, Stevie Wonder, and more -- was not only a celebration of the label's quarter century of success, but also a fundraising event for sickle cell. SCD was close to the Motown family, as one of their own (Temptations member Paul Williams) battled the disease, along with depression, and unfortunately, ended his own life just ten years prior.
One man, Michael Soyannwo, and his team are bringing this little-known fact to life in a new documentary called "The Night Motown Sang for Sickle Cell Anaemia," due to drop next Black History Month. According to Soyannwo, most people don't realize Motown 25 was a benefit concert for sickle cell because "the agenda changed the minute Michael Jackson did the Moonwalk." After that, that's all anyone could talk about and the issue of SCD got lost once again.
The doc, being filmed by the UK-based company Rockindale Productions, includes interviews with entertainment insiders, sickle cell experts, and journalists and tackles the unfortunate truth that "conditions that are suffered by people of color, always, always, are way, way down [on the list of importance]," says journalist Yasmin Alibhai-Brown in one clip.
Watch the full trailer below:
Category: Sickle Cell Disease, Sickle Cell Education Tags: black history month, sickle cell, sickle cell awareness month, the night motown sang for sickle cell anaemia | Comments Off on “Motown 25” and Its Contribution to Sickle Cell Awareness
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World Sickle Cell Day and Beyond: Creative Ways to Raise Awareness
June 19, 2017 by Andrea
Photo: CreateHER Stock
World Sickle Cell Day (and also Juneteenth) is here again, and like every year, people come up with various ways of celebrating and raising awareness. Some wear red, some host workshops, and most get active on social media -- sharing how they've chosen to observe the day. See below for a few of our favorite out-of-the-box ideas:
A Sweet Salute
They say the way to a person's heart is through their stomach. That's why some warriors and supporters have chosen to educate their communities via baked goodies like these. Like this idea? Check out other options here and here.#SickleCellAwareness and cookies. I'm in! #WorldSickleCellDay @TexasChildrens pic.twitter.com/HTABv5hJzI
— Amber Yates (@sicklecelldoc) June 19, 2017
Sickle Cell Series
As a journalist and filmmaker, Wana Udobang helps raise awareness through the stories she tells. For World Sickle Cell Day, she's created a series called "Warriors," which features four video interviews of people living with SCD. Watch the first video below.
Inspiring Images
Across the pond in London at the University College Hospital MacMillan Cancer Centre, "Seeing Red" -- an exhibition of photos taken by sickle cell warriors -- debuts today. According to UCLH, the photography is the culmination of the work the warriors did during narrative therapy pilot workshops.Celebrate World Sickle Cell Day @uclh. #SeeingRed Exhibition of photos taken by young people #living with red cell conditions. 6pm, 19/6. pic.twitter.com/yUnD3Q6GTS
— HCC UCLH (@HCC_UCLH) June 8, 2017
Have you seen any other creative ways to spread the word about sickle cell? Share them in the comments below!Category: Sickle Cell Disease, Sickle Cell Education Tags: sickle cell awareness, sickle cell warriors, world sickle cell day | Comments Off on World Sickle Cell Day and Beyond: Creative Ways to Raise Awareness
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Sickle Cell and Menstruation: How to Raise Awareness and Advocate for Better Care
May 26, 2017 by Andrea
Photo: pxhidalgo/istockphoto.com
Monthly periods can be painful enough for women and girls with completely normal red blood cells and hemoglobin levels. Throw sickle cell in the mix and typical cramps can become a full-blown crisis -- every single time. Research shows that menstruation can directly trigger a pain crisis in sickle cell warriors, and also confirms that this particular area of study is neglected. Much more exploration needs to be done in order to better care for female patients with SCD.
A common issue when it comes to the realm of period talk in general is that it's forsaken, perpetuating an idea that periods are taboo and "dirty" and "bad." This negatively affects women overall, fueling lack of understanding, causing women and girls in some countries to have to stay home from school and work, and even here in the United States, it has resulted in a serious deficiency of research, and in turn care, for sickle cell warriors on their periods.
To combat the stigma of this completely natural bodily process, WASH United created Menstrual Hygiene Day -- a global initiative to raise "awareness of the challenges women and girls worldwide face due to their menstruation and highlights solutions that address these challenges." First celebrated in 2014, MH Day occurs every year on May 28 (May is the fifth month and periods usually last five days, and a full cycle is typically 28 days). This provides the perfect opportunity for the sickle cell community to voice concerns and difficulties that are unique to them when it comes to that time of the month. Here's how to get involved:
1) Download the MH Day 2017 campaign materials here.
You'll find educational posters, fact sheets, emojis, and more -- in several languages!
2) Share your story on social media.
Not a sickle cell warrior? Help spread awareness through the stories of others like this one. Be sure to include the hashtag #sicklecell with the hashtags #menstruationmatters, #mhday2017, and/or #menstravaganza in your posts.
3) Host a seminar, local art exhibit, or other program to help educate the community specifically about how menstruation can affect sickle cell warriors.Category: Sickle Cell Disease, Sickle Cell Education Tags: menstrual hygiene day, sickle cell, sickle cell and your period | Comments Off on Sickle Cell and Menstruation: How to Raise Awareness and Advocate for Better Care
