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
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
June 6, 2018 by Andrea
June 19 is World Sickle Cell Day, but you don't have to wait until then to show your support and help raise awareness. Here are a few examples of what others are already doing leading up to World Sickle Cell Day 2018 to inspire you.
1. SHARE CREATIVE FUNDRAISING IDEAS
It's a good idea to stick to one major fundraiser each year, but you can host mini ones once per quarter, so as not to wear out the donors you seek. Just in time for the approach of World Sickle Cell Day 2018, the Sickle Cell Society recently shared this Fundraising A-Z chart developed by LocalGiving.
2. INVOLVE THE KIDS
Kids are naturally curious and inventive, so use that as you begin teaching children who may not know what SCD is. Then, ask them to come up with fun ways to help spread the word and get their friends in on the action, too. A group of seventh graders recently came up with the idea to wear red tape.
3. JOIN THE COLOR CAMPAIGN
Some have begun a campaign to encourage people to wear red and black for the entire month of June, rather than just one day, to help raise awareness of sickle cell. Join them by wearing your red and black, sharing your selfies, and urging others to do the same.
Category: Sickle Cell Disease Tags: world sickle cell day | Comments Off on World Sickle Cell Day 2018 Awareness Campaigns You Can Start Now
May 21, 2018 by Andrea
We're always scouring the internet and social media to find sickle cell questions that need answering, products that have recently been released, and topics that require more discussion -- all of which fuel our own article ideas. This week, we'd like to share our top three favorite write-ups from across the web that tackle sickle cell research issues, show more examples of warrior perseverance, and help doctors overcome biases toward SCD patients.
Here are the articles that stood out to us these past seven days:
CONTINUED LACK OF FUNDING
For 100 years, the scientific community has known about the existence of sickle cell disease; however, only two drugs have been approved specifically for the treatment of sickle cell in that time. Many believe the reason for sickle cell's lack of research funding and awareness is linked to the general apathy about the disease, since a large portion of patients are of African descent.
Read the full article here.
DREAM CHASER
Diagnosed shortly after birth, 13-year-old Aliyana McCrary has been competing in pageants since she was 2. Recently, she won her first title (in a regional competition), and now, she's preparing for nationals. We love this story about how she never lets her condition hold her back. Check out her GoFundMe to help her get to nationals -- any amount raised in excess will be donated to the Sickle Cell Foundation.
Read the full article here.
ANTI-STIGMATIZATION STUDY
A study out of Johns Hopkins School of Medicine tackled the idea that doctors whose patient notes contain stigmatizing language can affect that patient's care long-term. Using two sets of notes -- one without stigmatizing language and one with -- about a hypothetical African-American sickle cell patient, the researchers recorded the different reactions by a group of residents and medical students who'd read one versus the other.
Read the full article here.
Category: Research, Sickle Cell Disease Tags: sickle cell news | Comments Off on This Week in Sickle Cell News: Awareness, Perseverance, and Anti-Stigmatization
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
April 18, 2018 by Andrea
Along with blog posts, social media chats, and rockin' our red in support, traditional media such as television and radio can help sickle cell awareness efforts reach an even wider audience, an audience that may not know the truths about SCD. Here are three examples of sickle cell awareness hitting the airwaves in the past week:
1. BET's "The Rundown with Robin Thede"
On Thursday, April 12, this BET late night show aired a segment called "Pain and Prejudice." Interspersing light humor (it's a comedy show, after all) with facts, the segment addressed how doctors often don't take the pain Black patients are experiencing seriously, and they used the experience of sickle cell warrior Cassandra Trimnell (who's also the executive director of Sickle Cell 101) to explain this bias. "I don't know any other patient populations that have as much of a struggle getting pain medication as sickle cell patients, and a lot of people suspect it's because it's labeled as a 'Black disease,'" she said on the show. Watch the segment below:
2. Britain's Got Talent
Over the weekend, the B-Positive choir auditioned for Britan's Got Talent, giving them a huge platform to discuss sickle cell disease. The choir, which received yeses across the board, is the official choir of NHS Blood and Transplant and is made up of members who have sickle cell themselves or have family members or friends who do. "The NHS Blood and Transplant wants to get the message [out that] everybody give blood. That's what we're about," the choir director told BGT's judges. Watch their performance below:
3. The Tom Joyner Morning Show
Today, April 18, TJMS tackled sickle cell and the importance of African-American bone marrow donors for it's #GetWellWednesday segment. Specifically, they spoke with 8-year-old Darian Smith and his family. Darian needs a bone marrow transplant to live a healthier life. Read more about his story here.
Category: Sickle Cell Disease Tags: B Positive Choir, britain's got talent, sickle cell awareness, the rundown with robin thede, tom joyner morning show | Comments Off on Taking Sickle Cell Awareness to the Airwaves
September 25, 2017 by Andrea
Photo: CreateHer Stock
A few months ago, Dr. Eric Coles -- co-owner of Xickle RBC-Plus -- sat down with Stephany of "The Dope Science Show" to discuss sickle cell disease, how natural ingredients can be used to lessen SCD crises, and what advice he'd give to aspiring scientists, among other things. And just in time for Sickle Cell Awareness Month, Dr. Coles's episode has dropped.
Currently, Dr. Coles is working with his business partner Dr. Robert Swift developing a new drug for the treatment of sickle cell. SCD-101, as it's called, is the drug formulation of the current supplement (Xickle RBC-Plus) and has completed Phase l clinical trials, published those results (Click to read the article in the Journal Blood) and is currently in Phase ll clinical trials right now. The science of this development isn't all that new, though; it's actually based on Niprisan/Nicosan -- the drug used to treat sickle cell in Nigeria that, unfortunately, is no longer on the market.
"That's kinda the sad part of the story," Dr. Coles says. Apparently, back in 2003, the Nigerian version of the FDA approved the drug in Nigeria and licensed Niprisan to a U.S.-based pharmaceutical development company for the purpose of producing the drug as an FDA-approved one. But, before the U.S. company could develop anything, it went bankrupt. Around the same time, in Nigeria, the bank foreclosed on the facilities that produced Niprisan. All those with sickle cell that were taking Niprisan could not longer get their treatment.
Soon after, Dr. Swift, decided to take on the development of Niprisan himself. He did so alone from 2009 to 2011, when Dr. Coles joined him. Together, they have improved the formulation with more anti-sickling activity and have commenced clinical trials. So far the results have been excellent.
Listen to the entire podcast below to learn even more:
Category: Clinical Trials, Research, Sickle Cell Disease Tags: sickle cell, the dope science show, Xickle | Comments Off on “The Dope Science Show” Talks Xickle for Sickle Cell Awareness Month
September 19, 2017 by Andrea
"A Sick Life: TLC 'n Me: Stories from On and Off the Stage", the new memoir from Tionne "T-Boz" Watkins, was released on September 12 -- appropriately, right in the heart of Sickle Cell Awareness Month. More than a year in the making, this book details T-Boz's experiences of coping with sickle cell, while simultaneously making a living as a member of the highest-selling girl group.
In an exclusive interview with Good Morning America's Robin Roberts, T-Boz revealed the significance of her memoir's title. "It's a strong word, 'a sick life,' 'cause I've had it all," she said. "I was told I would never live past 30; I would be disabled my whole life and never have kids." Obviously, she beat every odd stacked against her and then some: She's now 47 years old, she birthed a child at age 30, and she managed a hectic schedule and traveled the world as a member of TLC. Surmounting those obstacles didn't come without setbacks, however.
According to People magazine, which landed the rights to publish excerpts of the memoir in their latest issue, T-Boz told them that after giving birth to her daughter Chase, her body began to shut down and she was in a coma for three days. “Often, it’s hard to breathe or walk,” the magazine reports T-Boz wrote in her memoir. “Some days I wake up consumed by pain. It’s like knives stabbing me over and over again in my joints. Chase gave me a reason to keep pushing through.”
"A Sick Life" is on sale now, and you can even get a signed copy of the book by clicking here.
Category: Chronic Health Conditions in Children and Adults, Sickle Cell Disease Tags: A Sick Life memoir, sickle cell awareness month, T-Boz, TLC | Comments Off on T-Boz Releases New Memoir Just in Time for Sickle Cell Awareness Month
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
August 28, 2017 by Andrea
Photo: Twitter/@QuietVoice
A London-based performance group is using entertainment as a way to increase visibility of SCD for Sickle Cell Awareness Month with a show called "Tough Blood." Infusing "street dance, projection, and sound design," this multimedia program will highlight real stories of real warriors ages 16 through 24 of Caribbean descent to encourage audience members to reflect on the disease and all who are affected by it in some way.
"Drawing on the history of black resistance and scientific research of the disease, the piece brings personal insight and seeks to open up questions around genealogy and perceptions of Sickle Cell Anemia," states a portion of the production's description on Eventbrite.
If you live in or around the London metro area, consider adding this event to your Sickle Cell Awareness Month agenda. The show will be held on September 27 from 6:30 p.m. to 8 p.m. at the Copeland Gallery in Peckham, and all funds from ticket sales will be donated to the Sickle Cell Society.
For the latest details, be sure to follow Tough Blood on Twitter.
Category: Fundraising, Sickle Cell Disease Tags: sickle cell, sickle cell awareness month, tough blood | Comments Off on Performance Aims to Bring Sickle Cell Awareness to the Stage
