Sickle Cell Awareness Thread: Sickle Cell Awareness Month 2023! UPDATE: FDA APPROVES GENE THERAPY

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Famous People with Sickle Cell Anemia Disease
Dec 12, 2013
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The sickle cell anemia disease is a kind of inherited condition that can affect various organs of the body including the blood. The disease affects the red blood cells that cause sickling and produce pain and other types of symptoms. The sickle cell anemia can trigger conditions like infection, colds, low oxygen and dehydration. The disease is common to those individuals with family origin and the disease is commonly inherited by most of the babies that born in the UK. The main cause of the disease is inherited. It is a sudden change in the genes that have the ability to tell the body to produce the well-known protein which is hemoglobin.

The hemoglobin is located in the red blood cells that carry oxygen and give the blood its red color. The diagnosis of the sickle cell anemia is done through a blood test. A blood sample is used in order to see the type of hemoglobin that you have in your blood. This test is called hemoglobin electrophoresis. Lifelong monitoring and treatment is commonly needed in order to treat the sickle cell anemia disease and with the help of a variety of treatments, you can prevent other symptoms of the disease like infection.


5 Famous People
Here is a list of famous people with sickle cell anemia disease:

1. Tionne “T- Boz” Watkins.
A singer in the group of TLC that has the sickle cell anemia and also the spokesperson for the Sickle Cell Disease Association in the United States.

2. Prodigy.
A rapper also shares the experiences of having this disease and expressed a word of encouragement for all the individuals who are also suffering from sickle cell anemia.

3. Tiki Barber.
An American football player. The football player also gives advice on how to treat this disease.

4. Larenz Tate.
An actor that has the sickle cell anemia together with his two brothers. They raised a foundation that deals with awareness of the disease. The two brothers also shared their experiences on how to fight and treat the said disease. They also encourage other people not to be afraid with the sickle cell anemia since this can be treated.

5. Miles Davis.
A Jazz trumpet player also encountered this kind of disease. The trumpet player wants to express a variety of experiences and treatments on how to fight the disease.


Sickle cell anemia is one of the most common genetic disorders especially in the United States. The disease is chronic yet treatable. You don’t need to be afraid if you encounter this kind of disease since the new technology of medicine already launched the solution for this disorder. The patients that have the sickle cell anemia require proper care and consultation to expert doctors. This way, the patient can make sure that the disorder can be treated. With the help of the new trends of technology especially in medical equipment, the sickle cell anemia can easily be treated. Just be sure that the proper medication and advice of the doctor is followed.

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Miles Davis And The Battle Against Sickle Cell Disease
BY SCRUBS EDITOR • LAST UPDATED: JUNE 19, 2017

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What Is Sickle Cell Disease?

June 19 is known worldwide as World Sickle Cell Day. Sickle Cell Disease is an inherited blood disorder in which the majority of hemoglobin within red blood cells is a defective form referred to as “S,” instead of the normal hemoglobin, “A.” Due to the presence of hemoglobin S, red blood cells become crescent or sickle-shaped, giving Sickle Cell Disease its name. The sickle-shaped blood cells cannot easily pass through blood vessels, causing those with the disease to experience a number of unique health complications.

There are different types of Sickle Cell Disease depending upon which hemoglobin genes are inherited. The blood disorder is also commonly known as Sickle Cell Anemia. In the case where a hemoglobin A and a hemoglobin S gene are inherited from each parent, the person is just a carrier of the Sickle Cell Trait and does not have Sickle Cell Disease. In order get Sickle Cell Disease, a person has to inherit the defective hemoglobin S gene, along with another defective hemoglobin gene, such as hemoglobin S, hemoglobin C, or hemoglobin beta thalassemia. Sickle Cell Disease affects over 100,000 people throughout the United States. Although people of all ages and backgrounds can inherit Sickle Cell Disease, the majority of people affected by the disease are African-American.

Miles Davis: Disease Leads to ‘Silent Period’ for Famous Musician

Miles Davis, a well-known African-American cool jazz musician from the mid-20th century, was born with Sickle Cell Disease. Along with being physically fatigued from excessive drug use and constantly performing, the trumpeter’s Sickle Cell Anemia caused him to have health issues that worsened over the course of his life. His condition caused him to go into a period of retirement during the 1960s where he stopped playing jazz altogether, historically known throughout the music community as his “silent period” or “lost years.”

Sickle Cell Anemia can cause brittleness of the bones. The disease caused Miles Davis to have an ongoing problem with bones chipping in his wrists and hips. This bone density issue kept him in immense pain throughout his career that had to be addressed with a number of intensive hip surgeries. When Miles Davis got into a terrible car accident in 1972, his bone condition worsened. The presence of Sickle Cell Anemia made it incredibly difficult for his hipbones to recover properly. Despite the constant pain from his bone issues, Miles Davis slowly got back into performing and was able to manage living with Sickle Cell Disease.

June 19: A Day to Raise Awareness Around the World

World Sickle Cell Day was established through the United Nations by countries worldwide to raise awareness about Sickle Cell Disease. The World Sickle Cell Day website explains that Sickle Cell is the most common genetic disease seen around the world and that most victims who inherit the congenital blood disease die before the age of 5. The United Nations has made it a public health priority to do everything in its power to win the global battle against the deadly effects of the disease. Efforts are being made to increase research and education, as well as improve medical training programs and provide better treatment options. African-American and other affected communities are doing what they can to alleviate the devastation of Sickle Cell Disease. Visit Sicklecellsociety.org today to make a donation and learn more about what you can do to help lessen the pain of Sickle Cell Disease.

Thank you to American Harbor College for additional information. Please visit their website to learn more about becoming a phlebotomist.

https://www.smithsonianmag.com/smit...er-notes-to-new-miles-davis-biopic-180958658/
 

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NCAA genetic screening rule sparks discrimination concerns
By Madison Park, CNN
August 4, 2010 8:13 a.m. EDT
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All Division I student athletes will need to undergo genetic screening for the sickle cell trait effective August.
STORY HIGHLIGHTS
  • NCAA requires genetic screening of all Division I college athletes for sickle cell trait
  • Nine college football players with the genetic trait have died since 2000
  • Critics say players could be subject to discrimination and differential treatment

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(CNN) -- A controversial new rule by the National Collegiate Athletic Association went into effect this month, requiring all Division I athletes to be screened for a genetic sickle cell trait.

While some applauded the new requirement, critics say it could expose players, mainly African-Americans, to genetic discrimination.

The rule requires all incoming student-athletes to get tested for sickle cell trait, show proof of a prior test or sign a waiver if they decline testing.

The mandate was part of a settlement between Rice University and the parents of college football player Dale Lloyd, who carried the sickle cell trait and died during a 2006 workout.

Unlike sickle cell disease, the trait is usually harmless and is inherited through a defective gene passed on by one of the parents.

People who inherit copies of the defective gene from both parents have sickle cell disease. Instead of round, flexible, doughnut shapes, the red blood cells look like rigid rods or sickles. This abnormal shape can clog blood vessels and deprive the body of oxygen.

But people with just sickle cell trait "have normal life spans and can perform just as well as other people in athletics," said Dr. Martin Steinberg, director of Boston University's Center of Excellence in Sickle Cell Disease.

While they rarely see complications, their bodies can breakdown during intense exercises or heat-related exertion, doctors said.

Sickle cell trait is found in about 8 percent of African-Americans. It appears in less than 1 percent of whites, although one example is Mark Richt, head coach of the University of Georgia football team, who has a son who tested positive for the trait.

Nine collegiate football players' deaths have been related to sickle cell trait since 2000, making exertional sickling the leading cause of death in NCAA football players this decade.

While the Sickle Cell Disease Association of America supports athletes knowing their genetic status, the chief medical officer, Dr. Lanetta Jordan, called the latest screening mandate troublesome.

"What we don't support with the NCAA ruling is that this ruling primarily is based on someone getting sued," she said. "So it's not linked to screening for the purpose of genetic counseling or parenting. It's screening for protection of the universities, not protection of the athlete."

Schools and coaches might treat athletes with sickle cell trait differently, she said.

"Will recruiters be as quick to recruit someone with sickle cell trait?" Jordan asked. "It's too early to tell, but will these students have the same opportunities as some without sickle cell trait? We don't know that."

The NCAA should follow the military's lead, Jordan said. Back in the 1970s, the U.S. military screened for sickle cell, but decided to abandon testing in favor of revamping the training protocol to eliminate the risk of heat-related illnesses and exhaustion for everyone.

"The NCAA has not chosen that route," Jordan said. "The route they chose is to identify everyone. If they are positive, those students will have an alternative practice protocol, which identifies them once again as being different."

Student athletes have been screened for sickle cell trait for more than a decade at the University of Oklahoma. Scott Anderson, the school's head athletic trainer, said modifications tailored to an individual's health needs do not create divisions or fuel discrimination.

"Modifications within sports are not unique to sickle cell trait," Anderson said. "We know and understand there are settings and circumstances that create risk for them."

For example, some players do not participate in certain conditioning or use heavy weight loads because of their health needs such as sickle cell trait, diabetes, asthma or muscular-skeletal syndromes.

The NCAA guidelines "emphasize that student-athletes with sickle cell trait should not be excluded from athletics participation," an association spokeswoman wrote to CNN.com.

The medical field is divided over whether there is enough evidence to warrant the mass screenings (outside from newborns), said Dr. Jeffrey Hord, medical director of the Showers Family Center for Childhood Cancer and Blood Disorders at Akron Children's Hospital in Ohio.

The exact mechanics of how sickle cell trait is related to the deaths during intense exertion are unclear, he said.

"Were there other conditions that contributed to this? Maybe it's sickle cell trait with asthma? Are there factors there we don't recognize at this point?"

Players with the trait should hydrate, pay attention to their bodies and communicate with trainers and coaches, Hord said.

Devard Darling and his twin brother learned they carried the trait when they were screened before joining Florida State University's football team but were given no further information.

During a February 2001 football practice, Devard saw his twin, Devaughn, with his head slumped slightly with an ice pack on his neck. They exchanged a glance, acknowledging how grueling football practice had been, and parted ways since Devard played offense and Devaughn was on defense.

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Devard and Devaughn Darling dressed identically until they were in the 10th grade and signed up to play for Florida State.
Devaughn went to mat practice, a series of drills that include dropping to the floor, rolling and sprinting repeatedly.

"It was not really air-conditioned," Darling recalled. "It's so hot and muggy in there. You have trash cans for people to throw up in. People are throwing up, passing out or fainting."

The next time Darling saw Devaughn, the linebacker was on his back, with trainers pumping his chest, trying to resuscitate him. A few hours later, Devaughn, 18, died.

"I have no idea why it happened to Devaughn," Darling said. "It was in the Lord's plan."

Nine years after his brother's death, Darling supports the NCAA screening.

"I think it's about time," he said. "Over the past years, there's been too many deaths related to it. Kids need to know they have the trait."

After his brother's death, Darling played at Washington State University and has played for the National Football League for four seasons without any sickle cell-related incidents. He's currently a free agent.

The complications are "easily preventable for people who have sickle cell trait," Darling said. "Number one is to stay hydrated and know when to take breaks. It's about knowing your body."
 

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https://www.healthline.com/health-news/stem-cell-treatment-offers-hope-for-sickle-cell-anemia-cure#1

Stem Cell Treatment Offers Hope for Sickle Cell Anemia Cure
The disease was reversed in a Canadian woman using a bone marrow transplant involving stem cells. Researchers hope the method will work for others.

declared cured this month after receiving a bone marrow transplant using stem cells from her sister. She’s the first adult to be cured of sickle cell anemia using this method in Canada. She expressed hope that her recovery could lead to more adults undergoing the procedure.

Up until a few years ago, bone marrow transplants were thought to be too toxic for adults with sickle cell anemia. In these procedures, chemotherapy kills a patient’s marrow before it’s replaced with that of a donor.

But a National Institutes of Health study, published in 2014, followed 30 people with sickle cell anemia between the ages of 16 and 65 who had undergone marrow transplants. The disease was reversed in 26 of them.

If the treatment can be more widely used by adults, it could help parents trying to make difficult decisions about treating children with sickle cell anemia.


“Bone marrow transplant works easiest the younger you are, but the problem is a couple-fold,” said Dr. Charles Abrams, spokesman for the American Society of Hematology.


Some of those with the disease, he said, do much better than others.

“For some, the disease is absolutely horrendous almost from the beginning, and others have a more mild disease,” he told Healthline. “And we don’t always do a good job of predicting who’s going to have a rougher time.”



Taking the risk
That matters, because treating the disease with as intense a procedure as a bone marrow transplant comes with plenty of risks.

A small percentage of people will die, Abrams said, and others will become infertile.

“So it’s not a free lunch,” he said. “Most people don’t want to take a child who’s relatively healthy, although they have a disease that is likely to cause a lot of problems later, and undergo a procedure like this.”

Most, he said, wait until later in life. By then, the patient may not be as healthy or able to tolerate the transplant.

For some particular cases, though, it may be worth the risk, as the Canadian case shows.

Revée Agyepong, 26, underwent the procedure in Calgary in November.


“When Revée approached us, we had coincidentally been thinking about adult stem cell transplant for sickle cell disease based on the remarkably good outcomes that Alberta Children’s Hospital has been seeing with transplants in the pediatric population,” Dr. Andrew Daly, who led the procedure as head of the bone marrow transplant program at the Tom Baker Cancer Centre, said in a statement.


“She met all the necessary criteria in terms of being able to tolerate a transplant, but, most important, she had a sibling who was a 100 percent match,” he added.


How sickle cell anemia attacks
According to the American Society of Hematology, about 70,000 to 100,000 Americans have sickle cell anemia, also called sickle cell disease. It mostly affects people of African descent.

A genetic mutation causes red blood cells to form abnormally in the crescent shape of a sickle.

That can cause blood to get stuck in blood vessels. As a result, some organs or parts of the body don’t get enough blood, leading to pain, the death of vital organs, kidney disease, or heart attacks.

Bone marrow is where blood cells form. A transplant swaps out bone marrow with the genetic mutation that causes it to produce sickle-shaped red blood cells with marrow from a person without that mutation.

“In theory, if you could give this to everyone, you could cure everyone of the disease. And if there were no toxicity, we probably would,” Abrams said.

He said the transplant procedure was discovered when a patient with sickle cell anemia received a transplant to treat their leukemia, then found it reversed both diseases.

Today, it’s still the only potential cure available to those with sickle cell anemia, he said, “although there are others in the pipeline.”

Looking at gene-related treatments

Gene therapies are being developed to try to correct the genetic abnormalities in patients’ own genes without swapping them out.

Researchers generally see these developments, using the gene-editing tool CRISPR, as the future of curing sickle cell anemia.

Over the past couple years, scientists have been able to alter genes in blood stem cells from patients with sickle cell anemia and transplant them into mice. Several institutions and companies are reportedly working on submitting applications for clinical trials to further test these methods.

As for new potential treatments in the pipeline, the U.S. Food and Drug Administration (FDA) said it couldn’t discuss “treatments that may be undergoing FDA review, as that is confidential information.”

For now, there are only two drugs approved by the FDA to treat sickle cell anemia.

One is hydroxyurea. It can now be used in patients 2 years old and older.

The other is Endari. In July, it became the first new treatment approved in nearly 20 years.

Both work to reduce the frequency of “crises,” or the severe attacks of pain and other complications that arise from the disease.

Blood transfusions are also used to treat anemia, the lack of healthy red blood cells brought on by the disease.

But, Abrams said, “There a lot of very exciting things are on the horizon. [Bone marrow transplants using stem cells] is one of them, but it’s not as new as the others. It does work in some patients, but it can be a rough road.”
 

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https://www.theguardian.com/books/2018/apr/14/ayobami-adebayo-men-women-sacrifices-nigeria

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Stay With Me has put her on the pages of Vogue and now the Wellcome prize shortlist. She talks about dating and growing up in a turbulent Nigeria

Sat 14 Apr 2018 06.59 EDTLast modified on Mon 16 Apr 2018 07.52 EDT

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Ayòbámi Adébáyò’s Stay With Me received a glowing review from Michiko Kakutani of the New York Times. Photograph: Katherine Rose for the Observer
It has been quite a year for Ayòbámi Adébáyò. She is in London for International Women’s Day, as she was last year, when it was announced that her first novel had been longlisted for the Baileys prize. Stay With Mewent on to make the shortlist and is now up for the Wellcome prize, the winner of which will be announced later this month. The novel was glowingly reviewed, not least by the New York Times’s high priestess Michiko Kakutani(“stunning”, “powerfully magnetic and heartbreaking”); Sarah Jessica Parkerchose it for the American Library’s book club; and the author, who has just turned 30, has been interviewed in both the Paris Review and Vogue. When we meet, she has come from the BBC, where she had been discussing the #MeToo movement in Nigeria. “It’s complex and very different across regions, across class, maybe even across religions,” Adébáyò says, describing what it means to be a young woman in her home country. “I think there is a dissonance between how much is expected of you as a young person, whether you are a man or a woman: you are supposed to go to university, you get a master’s degree, maybe two, particularly if you come from the middle class.

“And somehow, when it gets to a certain point, there’s a separation in how far you can go because a woman is to subsume all of her ambition to – some would say – the ultimate goal of marriage. To be fair, men are also pressured into getting married. But I don’t think men are expected to make the sacrifices that are routinely expected of a woman.”

Nigeria in the 1980s and 90s. Told in turn from the perspectives of wife and husband, Yejide and Akin, the novel shows what happens when romantic love comes up against social expectations, as Yejide’s failure to conceive becomes a family matter in a culture where a second wife is seen as the obvious solution. Folk tales, gossip at the hair salon Yejide owns, mother-in-law Moomi’s bossy superstitions and bulletins of military takeovers – Stay With Me captures a country and a couple in conflict, pulled between tradition and modernity.

One scene, which would be comic were it not so grotesque, records poor Yejide’s pilgrimage to the Mountain of Jaw-Dropping Miracles, culminating in her breastfeeding a goat. When she finally has a baby, Yejide discovers that she has passed on sickle cell disease.

Infertility and the loss of children might seem audaciously challenging subjects for a first novel, let alone one by a writer then in their 20s, but they are issues which Adébáyò has been thinking about for some time. She was at university when she discovered that she was among Nigeria’s one in four healthy people who are carriers of the sickle cell gene, making it the country most affected by the disease in the world. The depiction of the devastating impact of SCD on families earned the novel its place on the Wellcome list, a prize for fiction or non-fiction that engages with medicine or illness.

“I was thinking of dating someone ...” she says with a big, ready laugh when I ask her about why she decided to take the test then. “It makes for awkward conversations. But it’s better to know as early as possible. Because if you become emotionally involved with somebody it’s more difficult to say to yourself: ‘I’m going to walk away from this because I don’t want to make a decision that could have an impact on somebody who’s not here.’ ”

Half of a Yellow Sun, set during the Biafran war, Stay With Me records a period of modern Nigerian history, beginning with the 1985 military coup, a few years before the author was born. Why did she choose to return to the political landscape of her parents and grandparents?


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Women waiting to register to vote in Kano, 2015. Photograph: Goran Tomasevic/Reuters
“I was very young when the 1993 elections were annulled,” she says. “All I remember about it was that I didn’t have to go to school and I was very excited about that. I did remember my parents were sorely disappointed ... The level of frustration that many people felt, the disillusionment of thinking that any moment now we were going to go back to democracy and having that hope dashed and postponed and then eventually dashed totally. I think it had quite an impact on us as children.”

Drawing on “the atmosphere of fear” that hung over her childhood, she made the Lagos and Ilesa of the novel unsettling cities of armed robbers, power cuts and protests. “Sometimes I would be at my grandfather’s place and my uncles would discuss politics downstairs and we would just tell them ‘don’t say that outside’. Because there were people who did disappear, that sort of thing started to happen.”

Wole Soyinka was a professor there from 1976 to 1999 –going on to do an MA, with plans to become a teacher. During her final year she landed a place on a new creative writing workshop set up by Adichie, just after Half of a Yellow Sun was published. It meant going back and forth to Lagos, about three hours’ drive away. “That was when I realised that I would rather fail my exams than not take advantage of this opportunity. It was absolutely worth it.”

She has been lucky in her teachers. In 2014 she began the MA in creative writing at the University of East Anglia in Norwich (“I grew up in a university town, so it felt almost like home,” but a bit less sunny), coinciding with Margaret Atwood’s tenure as visiting Unesco professor. Her year at UEA was the first time that she didn’t feel writing “was stealing time from something else that I had been paid to do”.

Stay With Me took five years to finish, in between working crazy hours at a bank in Lagos. At the end, she was satisfied. “I felt like I would look at it in 10 years and think this is the best I could have done at that time.” The response has been “quite overwhelming”, especially in Nigeria, where, she says, people have really “taken such an ownership of the story”.

And the dreaded second novel? “There will be Nigerians ...” is all she will say.

After all the heartbreak, it’s not giving too much away to say that Stay With Meends optimistically – or at least with the possibility of redemption.

But one thing she really wants the reader to take from the novel is how Yejide, at first “terrified about being alone in the world, makes the journey to where she’s comfortable with relying on herself. She’s always been a strong character, but by the end of the book she comes to own that strength unapologetically”
 

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Why not just take Glutamine if that's the main ingredient in this drug?

What many with sickle cell need to understand is the cells sickle and starve organs of oxygenated blood. So my remedy is to supply the body with more blood cells with the right type of iron, #4 Ferrum Phosphoricum. Folic Acid also is crucial. L-Arginine is also good for sicklers to take.

I have my own little remedies that I have been treating my kids with for over 20 yrs. Things I've learned from Dr Sebi and others who are health professionals. I'm just not an advocate of drugs. Prefer the all natural route. Using drugs as a last resort. Because of the toll they put on your body over time.


M.D. here, and I agree with you. From the package insert, Endari seems to just be glutamic acid, an amino acid. In addition, it is thought to work by increasing available reduced glutathione, which is also available and sold as a supplement. I will add the caveat that not all supplements are created equal, with some not having the actual listed amounts of ingredients, with patients becoming toxic due to unintentional overdosages (the same has been true of some pharmaceutical lots as well). Adverse reactions are still possible, and anything we put into our bodies can potentially be harmful. Both natural remedies and pharmaceuticals alike can both save and take lives.
 

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M.D. here, and I agree with you. From the package insert, Endari seems to just be glutamic acid, an amino acid. In addition, it is thought to work by increasing available reduced glutathione, which is also available and sold as a supplement. I will add the caveat that not all supplements are created equal, with some not having the actual listed amounts of ingredients, with patients becoming toxic due to unintentional overdosages (the same has been true of some pharmaceutical lots as well). Adverse reactions are still possible, and anything we put into our bodies can potentially be harmful. Both natural remedies and pharmaceuticals alike can both save and take lives.

Peace and Thank you for your advice. Mixd has helped me with my youngest who has sickle cell since the day she was diagnosed, its been a challenging 1st year of life.

My mission has been to really spread not only support & advice for families and KNOWLEDGE (accurate!)

but just having this disorder be RECOGNIZED by the world.

Its sad that in 2018 we still have the hurdle of EXPLAINING what Sickle Cell even is...many times to medical professionals.
 
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playahaitian

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Fam,

Ya'll know I have a baby with Sickle Cell Disease, in fact she is just back in the hospital again second time in a month.

Just wanted to ask for my bgol fam to do what they do and assist us in getting support for the Sickle Cell Assembly Bill in New York State...

If ya' ll can all send a tweet or on Facebook

and tell Governor Cuomo to support this bill it would be a blessing.

I KNOW many of ya'll don't vote.

I understand.

But this is making these government officials actually DO THEIR JOBS

and help THOUSANDS of children and young adults

MANY of them Black to get treatment and support

I keep telling ya'll BGOL is MUCH MORE then an internet board.

Peace fam and thank you for your support...


sample tweet...

Please take a moment today (and every day!) to tweet Governor Andrew Cuomo to approve funding for sickle cell!
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1f4b0.png
1f4aa-1f3fd.png
@NYGovCuomo – Fully Fund the Sickle Cell Disease Assembly Bill 5313 and Senate Bill 4054.

 
Last edited:

playahaitian

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Fam,

Ya'll know I have a baby with Sickle Cell Disease, in fact she is just back in the hospital again second time in a month.

Just wanted to ask for my bgol fam to do what they do and assist us in getting support for the Sickle Cell Assembly Bill in New York State...

If ya' ll can all send a tweet or on Facebook

and tell Governor Cuomo to support this bill it would be a blessing.

I KNOW many of ya'll don't vote.

I understand.

But this is making these government officials actually DO THEIR JOBS

and help THOUSANDS of children and young adults

MANY of them Black to get treatment and support

I keep telling ya'll BGOL is MUCH MORE then an internet board.

Peace fam and thank you for your support...


sample tweet...

Please take a moment today (and every day!) to tweet Governor Andrew Cuomo to approve funding for sickle cell!
2764.png
1f4b0.png
1f4aa-1f3fd.png
@NYGovCuomo – Fully Fund the Sickle Cell Disease Assembly Bill 5313 and Senate Bill 4054.

 

playahaitian

Rising Star
Certified Pussy Poster
Fam,

Ya'll know I have a baby with Sickle Cell Disease, in fact she is just back in the hospital again second time in a month.

Just wanted to ask for my bgol fam to do what they do and assist us in getting support for the Sickle Cell Assembly Bill in New York State...

If ya' ll can all send a tweet or on Facebook

and tell Governor Cuomo to support this bill it would be a blessing.

I KNOW many of ya'll don't vote.

I understand.

But this is making these government officials actually DO THEIR JOBS

ESPECIALLY GOVERNOR Cuomo

twitter: @NYGovCuomo

e mail: https://www.governor.ny.gov/content/governor-contact-form

Phone: 1-518-474-8390

and help THOUSANDS of children and young adults

MANY of them Black to get treatment and support

I keep telling ya'll BGOL is MUCH MORE then an internet board.

Peace fam and thank you for your support...

sample tweet...

Please take a moment today (and every day!) to tweet Governor Andrew Cuomo to approve funding for sickle cell! @NYGovCuomo – Fully Fund the Sickle Cell Disease Assembly Bill 5313 and Senate Bill 4054.




https://www.bgol.us/forum/threads/h...upport-for-sickle-cell-assembly-bill.1025283/
 
Last edited:

playahaitian

Rising Star
Certified Pussy Poster
Fam,

Ya'll know I have a baby with Sickle Cell Disease, in fact she is just back in the hospital again second time in a month.

Just wanted to ask for my bgol fam to do what they do and assist us in getting support for the Sickle Cell Assembly Bill in New York State...

If ya' ll can all send a tweet or on Facebook

and tell Governor Cuomo to support this bill it would be a blessing.

I KNOW many of ya'll don't vote.

I understand.

But this is making these government officials actually DO THEIR JOBS

and help THOUSANDS of children and young adults

MANY of them Black to get treatment and support

I keep telling ya'll BGOL is MUCH MORE then an internet board.

Peace fam and thank you for your support...


sample tweet...

Please take a moment today (and every day!) to tweet Governor Andrew Cuomo to approve funding for sickle cell!
2764.png
1f4b0.png
1f4aa-1f3fd.png
@NYGovCuomo – Fully Fund the Sickle Cell Disease Assembly Bill 5313 and Senate Bill 4054.



Twitter: @NYGovCuomo

Instagram: https://www.instagram.com/nygovcuomo/?hl=en

E Mail: https://www.governor.ny.gov/content/governor-contact-form

Phone: 1-518-474-8390
 
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