World Sickle Cell Day 2022
From the Desk of Our Founder On
World Sickle Cell Day
One who gains strength by overcoming obstacles possesses strength which can overcome adversity.
Most people live in fear of some terrible event changing their lives, the death of a loved one or a serious illness. For those born with inherited disease, this terrible event has already happened, and we have been let in on an amazing secret: We can survive. You adapt, and your life changes, but in the end you fight thru the pain, with whatever compromises you have been forced to make, whatever losses you have been forced to endure. You learn to balance your fears with the simple truth that you must go on fighting and living.
To be a Sickle Cell Warrior means you’re born a fighter.
As Warriors, we fight for ourselves and for each other.
World Sickle Cell Day is observed annually with the goal to increase public knowledge and an understanding of sickle cell disease, and the challenges experienced by patients and their families.
It is also a day for warriors all around the world to come together to honor those we have lost, lift each other up, and advocate for a better future.
Emmy Lott is a sickle cell warrior. She is brave and shows us everyday what a true warrior looks and fights like.
She has battled Sickle Cell Disease every day since she was born - first admission at only 5 weeks old. She has had countless admissions, PICU stays, acute chest syndrome, pain crises, etc. She is no stranger to all that this disease brings. Emmy fights through Sickle Cell Disease with bravery and courage and joy in her heart.
We are so proud to honor this brave warrior.
May5 World Day Warrior
Sickle Cell Disease
Sickle cell disease affects about 150,000 African-Americans each year. There are few treatments for it, and not enough is being done to prevent complications. Just recently, the Centers for Medicare and Medicaid Services declined to put in quality measures that might help monitor care improvements.
There is also a question about what role race and wealth play in how much attention and funding the disease receives.
The disease is caused by a gene mutation that leads to red blood cells that are misshapen. These malformed cells have more trouble traveling through blood vessels, and can break or clump in ways that can lead to significant pain, strokes, and tissue or organ damage. Sickle cell disease is not a mild illness. It is probably responsible for up to 16 percent of childhood deaths in the African American community.
The cell malformations were identified more than a century ago. The inheritance patterns were published 100 ago. The first treatment, hydroxyurea, was approved only in 1998. It was the only treatment available for almost 45 years. A second drug, Endari, was approved two years ago.
Stem cell transplants can be curative, but they are very risky and can be performed only when a match is found. They also require lifelong therapy to prevent rejection. Recent news has also hinted at the promise of the gene-editing technology CRISPR to treat sickle cell disease, but only one patient in the United States has been treated so far, and it will be some time before results can show if it can be more widely used.
Moreover, although sickle cell disease is rare, other rare diseases achieve much more attention.
Cystic fibrosis is another inherited disease that reduces life expectancy. In the United States, it’s about one-third as common as sickle cell disease.
As with sickle cell disease, there are no definitive therapies, but a number of recommended actions and screenings can improve life immensely. In 2020 a study published in Blood compared spending on the two diseases by the National Institutes of Health and national foundations.
Studies by NIH shows that research funding per person affected by cystic fibrosis was more than 17 times that of per-person funding for sickle cell disease.
Spending by national foundations for cystic fibrosis was 440 times higher. More than three times as many publications in the peer-reviewed literature focused on cystic fibrosis.
No drugs were approved for sickle cell disease over the study period, while nine were approved for cystic fibrosis.
Cystic fibrosis gets a lot more attention, focus and support because it affects a demographic group with potential resources and other characteristics.
Sickle cell disease often affects the most vulnerable of populations. Around 90 percent are Medicaid-enrolled. Sadly, there is also likely a measure of unconscious and conscious bias toward this population.
It’s impossible to improve quality without being able to measure it. When it comes to sickle cell disease, we seem to be failing to do both.
2022 Leona Mays Education Award Winner
Mrs. Averil Turner
Mrs. Turner has dedicated her career to making a difference in the lives of her students and her community.
Mrs. Turner is one of the Assistant Principals at Loranger Elementary School. She is in her 27th year in education, and she is extremely passionate about educating and guiding her scholars in the right direction.
Grief and Loss Camp
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Grief and Loss Camp 2022
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