March 30, 2016 by Andrea
Photo: CreateHer Stock
Last year, we published a popular round-up of the Twitter accounts every sickle cell warrior should follow, and now, we're bringing you a similar list of Instagram accounts dedicated to sickle cell awareness and education.
Inspired by a recent tweet to us asking how people can turn what the McCourty Twins do into national awareness and fundraising, this list is the perfect start for gathering much of the inspiration you'll need to launch your campaigns. Of course, most events do not start nationally right out the gate, but begin on the local or regional level and grow from there. But who knows, maybe you'll end up pitching your newfound ideas to a national association that can help take your concepts to the next level a little bit sooner.
@sicklecell101
"Certified sickle cell educators | education + awareness"
@sicklecellmatters
"Connecting families, healthcare professionals, private and public entities worldwide to promote awareness and online funding campaigns for SCD."
@ssscfoundation
Samira Sanusi Sickle Cell Foundation based in Lagos, Nigeria
@shawnstestimony
"You will get awareness all day with us! A pinch of luv and a lil treasure on the side. U wanna learn how 2 advocate like no otha ... come join us!"
@sicklecell.life
"Sickle-cell anemia - facts Tips to live your life ... Motivation, Quotes, Treatment, Healthy food/drinks tips"
@nazhitheebaker
"12yrs Old Chef. Creator of Nazhi Thee Baker Angel Foundation Non-Profit Organization"
@scdaa
"Official Page of the National Sickle Cell Disease Association of America, Inc."
@sicklecellstories
"A place you can share your sickle cell experiences."
@paincrisis
"Sickle Cell Advocate. Breaking the silence one post at a time."
@sicklecellfoundationng
"Sickle Cell Foundation Nigeria. Bringing hope to the African Child."
Did we miss any of your favorite sickle cell warriors? Add their Twitter handles in the comments below!
Category: Fundraising, Resources for Parents, Sickle Cell Disease, Sickle Cell Education Tags: sickle cell disease, sickle cell education, sickle cell fundraising | Comments Off on 10 Instas You Should Follow for SCD Awareness and Fundraising Inspo
March 21, 2016 by Andrea
Photo: Twitter
When she was only 10 years old, sickle cell warrior Nazhi got the idea to try her hand at baking delicious sweets that would also be healthy. She'd recently seen her older sister, also a sickle cell warrior, suffer a massive stroke, which contributed to her passion for creating healthy foods.
On her website, Nazhi talks about how her first recipe for peanut butter cookies was an immediate hit, spurring her to expand her repertoire of treats to cheesecakes and ultimately to pound cakes. Now 12, Nazhi bakes and sells her pound cakes -- in flavors such as traditional, lemon zest, caramel pecan, and chocolate ganache -- directly from her website.
But baking is only a small part of her mission. Through her Nazhi Thee Baker Angel Foundation, she uses the funds raised from her cake sales, as well as from generous donors, to help raise awareness of SCD. She also uses the funds to create and deliver care packages she calls "TLC bags packed with tons of goodness" to other children living with sickle cell. Her plans are to eventually have her goodie bags distributed to every city that has pediatric hematology departments.
Support the amazing efforts of Nazhi by ordering your cake here or by donating to her cause.
Category: Fundraising, Sickle Cell Disease, Sickle Cell Education Tags: fundraising, Nazhi the Baker, sickle cell awareness, sickle cell disease | Comments Off on Meet the 12-Year-Old Chef Who Bakes Cakes for Sickle Cell Awareness
March 14, 2016 by Andrea
Photo: CreateHer Stock
According to the Sickle Cell Disease Association of America, the average life expectancy for sickle cell warriors living in the U.S. is in the mid 40s. However, these warriors -- from all over the world -- are proof that if given the proper treatment and lifestyle care, people living with SCD can live well past that.
1) Asiata Onikoyi-Laguda
This past November, Asiata celebrated her 90th birthday! A Nigerian native, Asiata is thought to be the oldest person in the world living with sickle cell, and in an interview she gave with The Cable newspaper, she revealed that she's never had any dietary restrictions, but that she does eat what she likes in moderation. “I have always maintained a middle road in life. Moderation keeps you going, when those who indulge themselves have lost their balance,” she told the paper.
2) Richard Mitchell
Now 72, Richard Mitchell's milestone 70th birthday was celebrated in the New York Times. When diagnosed, he was told by his doctors that he wouldn't live past 40. His secret? Taking things one day at a time, avoiding stress and dehydration, eating well, and exercising.
3) Lenabell Bell
Lenabell began experiencing crisis-related pains as a child, but wasn't actually diagnosed with sickle cell until she became pregnant with her first daughter in 1939. Almost 20 years later, she joined a sickle cell research project and ultimately outlived every other patient on the project -- Lenabell made it to the ripe old age of 83 in 2000. Inspired by her longevity, her most recent doctor wrote a memoir about her that you can get here.
4) Ernestine Diamond
Now 89, Ernestine Diamond is the founder and CEO of Sickle Cell Action Through Technology, where she's been advocating on behalf of all sickle cell warriors for more than 30 years. She's also the author of an upcoming book entitled, "Learning to Live Well With Sickle Cell, Victorious Living in the Midst of the Storm."
5) Birney Smith
Born in 1929, Birney, a retired United States Postal Services worker, didn't know the cause of his painful episodes until he reached his 20s. At the 2015 World Sickle Cell Day celebration in his hometown of Pittsburgh, Pennsylvania, Birney told the New Pittsburgh Courier that he has never let SCD keep him from living his best life. He told the paper that the best advice he can give is to, "keep up your faith in your eternal maker, creator; He controls everything. Keep the best of intentions and the golden rule is to treat other people the way you'd want to be treated."
Category: Sickle Cell Disease Tags: Asiata Onikoyi-Laguda, Birney Smith, Lenabell Bell, oldest people with sickle cell, Richard Mitchell, sickle cell | Comments Off on 5 Warriors Who are Proof That You Can Live a Long, Healthy Life with SCD
March 9, 2016 by Andrea
Photo: Gratisography
ICYMI, yesterday was International Women's Day -- and the entire month of March is Women's History Month. That's why, this week, we're recognizing five female pioneers of sickle cell research, one for each week of the month.
1) Angella Ferguson
A Howard Grad and one of few females at the time to be admitted into medical school, Dr. Ferguson began her career as a pediatrician studying the development of SCD in African-American babies in the 1950s. Through her research, she was able to develop a blood test to diagnose sickle cell in infants. That test became the national standard in 40 states by 2010.
2) Dr. Helen M. Ranney
One of the first to delve into the actual genetic makeup of sickle cell, Dr. Ranney also started her research in the 1950s, during which she was able to devise a way for doctors to tell normal hemoglobin apart from abnormal hemoglobin. This method gave way to another procedure she developed to identify adult carriers of the sickle cell gene.
3) Henrietta Lacks
You may be familiar with Henrietta, as her entire story was the basis of the Rebecca Skloot's book, "The Immortal Life of Henrietta Lacks." (BTW: If you haven't read it yet, we highly recommend it.) To summarize, Henrietta Lacks was a poor, Black tobacco farmer who died of cervical cancer at the age of 31. During her surgery to implant radiation tubes in early 1951, several months before her death, the doctor removed cancerous cells, as well as healthy cells -- without her permission. Those healthy cells have become known as "immortal" because they are still multiplying rapidly in labs across the country. Not only has research done with these cells led to breakthroughs in sickle cell disease treatments, but also in a variety of other conditions.
4) Emmanuelle Charpentier and Jennifer Doudna
This team created a gene-editing method for doctors to add/remove genetic material at will -- similarly to how you might add/remove programs from your computer's control panel. Being able to alter abnormal genes, like the ones that can cause sickle cell disease is important to working toward better treatment and an eventual cure.
5) Marilyn Hughes Gaston
As a medical intern at Philadelphia General Hospital in the 1960s, Dr. Gaston became interested in sickle cell disease and went on to specialize in it. Upon completing her internship, she became director of the Sickle Cell Disease Center in Cincinnatti, Ohio and after four years, moved on to the National Institutes of Health. There, she published a study about how long-term treatment with antibiotics can help prevent septic infections in infants with sickle cell. This study also led to government legislation and funding of sickle cell-related programs and education.
Category: Sickle Cell Disease Tags: Angella Ferguson, Dr. Helen M. Ranney, Emmanuelle Charpentier and Jennifer Doudna sickle cell, Henrietta Lacks and sickle cell, Marilyn Hughes Gaston sickle cell, sickle cell disease | Comments Off on 5 Women Pioneers of Sickle Cell Research You Should Know About Now
