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SICKLE CELL DAY – SCAGO celebrates first official National Sickle Cell Awareness Day

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BY: DELLIA RISMAY 

June 19th , 2018, marked the first recognized National Sickle Cell Awareness Day in Canada. The country is the first in the world to legally recognize the day. To honor its significance, the Sickle Cell Awareness Group of Ontario, also known as SCAGO, invited those affected by the disease, including patients and their loved ones, medical professionals, and dignitaries to take part in a flag raising ceremony and reception at Toronto City Hall.

Lanre Tunji-Ajayi, the CEO of SCAGO, welcomed the crowd on the podium roof of Toronto City Hall, where all were gathered to watch the flag of the Sickle Cell Disease Association of Canada (or SCDAC) being raised. SCAGO is a member of the national body, which regulates patient advocacy throughout Canada.

Dignitaries present for the event included Lloyd Wilks, Toronto’s Consul General of Jamaica, Derrick James, Toronto’s Consul General of Grenada, Jane Cordy, Senator for Nova Scotia, and James Pasternak, a councilor for the city of Toronto. Also present were Dr. Isaac Odame, Chair of the Global Sickle Cell Network, Kabu Asante, President of the African-Canadian Social Development Council, Joseph Bodun Macaulay, and Jenny Gumbs, President/CEO and Chair of SCDAC, respectively.

With the introduction of National Sickle Cell Awareness Day, those in the sickle cell community hope to increase visibility and knowledge of the disease. Groups that have been advocating for more knowledge of sickle cell disease, such as SCDAC and its member organizations like SCAGO have been working towards making National Sickle Cell Awareness Day a reality. Lanre told Toronto Caribbean Newspaper about how important it is to have an officially recognized day for sickle cell disease.

“It is monumental, not only for the Awareness Group of Ontario alone, but also for the Sickle Cell Disease Association of Canada that worked very hard on this bill, and also for the general sickle cell community,” she explained. “It’s a day that will open up a lot of opportunities for us in terms of awareness creating, in terms of education. Many of the care providers in this province still don’t have strong knowledge around sickle cell disease. When our patients present for treatment, they sometimes tag them as drug seekers. So, having more opportunities to raise awareness will really expose sickle cell disease to more people.”

Bill S-211 is the Act responsible for getting June 19th recognized as National Sickle Cell Awareness Day. Senator Jane Cordy and Member of Parliament for Dartmouth-Cole Harbour Darren Fisher introduced it in the Senate and the House of Commons, respectively. It received Royal Assent and became law on December 12th, 2017.

Senator Cordy expressed her satisfaction at the bill being passed but also stressed that more work needs to be done. “We’ll celebrate today, but there is a whole lot left to do. We need newborn screening for all babies,” she said to the crowd during her speech at the event’s reception.

The event also featured short speeches from several people in the sickle cell community. Patients, their family members, and doctors described their experiences with the disease, namely the struggles they experience to get healthcare practitioners more familiar with how painful a sickle cell crisis can be, as well as the need for a standard of care at doctor’s offices and hospitals across the country.

MaryAnn Gordon, who is the mother of a child with sickle cell disease, spoke to the crowd about the challenges her family faces, especially when it comes to taking her child to hospitals other than The Hospital for Sick Children. She recalled the times she had to take her child to a different healthcare facility, and her apprehension of the kind of treatment her child would receive there.

Doctor Jacob Pendergrast, who hosted the event’s reception, also shared his desire for a more uniform standard of care when it comes to treatment of sickle cell disease, and the treatment of patients in crisis. Dr. Pendergrast treats patients with sickle cell disease as well as other disorders in Toronto General Hospital’s Red Blood Cell Disorders Clinic.

Sickle cell disease, the most common genetic disease in the world, is a hereditary blood disorder that results in red blood cells becoming sickle-shaped instead of round due to an abnormal form of hemoglobin. A healthy red blood cell carries oxygen around the body, while the red blood cells of a person with sickle cell disease can become stiff and block blood vessels. When these blockages occur, they can cause pain and damage to vital organs in the body. If a blockage becomes severe, it becomes a sickle cell crisis. Immediate treatment is vital in these instances, as long-term organ damage can occur from a crisis. A sickle cell crisis cannot always be avoided, but the risk of them can be lowered if the individual avoids triggers such as extreme changes in temperatures and dehydration.

Sickle cell disease can be found in people from all walks of life, but it is more commonly found in those with African, Caribbean, Middle Eastern, Mediterranean, South American, Central American, or Southeast Asian origins. It can also be found in those with roots in the Western Pacific Region. In Ontario, it is estimated that there are over 2,500 people living with sickle cell disease.

One of SCAGO’s goals is to educate the public about sickle cell disease and encourage everyone to get tested, especially those who are planning to start a family. Because carriers of the sickle cell trait are generally healthy and do not exhibit any symptoms, many carriers do not know about their status until they have a child with another person that is a carrier, and the child is born with sickle cell disease. SCAGO estimates that a staggering 80% of African-Canadians carry the sickle cell trait. Lanre urges everyone to find out if they are a carrier.

“Having a child with sickle cell disease is a very expensive venture that you don’t get into ignorantly. You may be a carrier and want to have your children with another carrier of the sickle cell gene, but at least it’s best to know before you go into that relationship to know what the prospect of you having a child with sickle cell is, and the options are that are available for you. But you won’t know all of that if you don’t get tested and know your own status first.”

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Timeless music brought to life on stage; Welcome to the Soul Nostalgic Experience

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Photo Credit: Jose Maria Elizalde

BY SIMONE J. SMITH

“Ladies and gentlemen, welcome to the Soul Nostalgic Experience! Tonight, we’re taking a journey back in time to relive the magic of an era that continues to inspire and captivate audiences worldwide. Are you ready to feel the groove?”

The audience erupts into cheers and applause as the band launches into a classic soul tune. People start swaying in their seats, unable to resist the infectious beat. A few brave souls even start dancing in the aisles.

Imagine being transported back in time to the golden era of R&B and Soul music, where smooth melodies and infectious rhythms ruled the airwaves. Now, envision this timeless music brought to life on stage with the energy and spectacle of a Las Vegas residency.

That’s precisely what the Soul Nostalgic Experience is all about. As I stepped through the doors, I was greeted by the smooth ambiance of classic R&B tunes mingling with the clinking of glasses and the tantalizing aromas wafting from our kitchen. The atmosphere was electric, alive with the anticipation of what the night had in store.

In the heart of Toronto’s vibrant music scene, there exists a figure who orchestrates brilliance from the shadows. Steve Hollywood, a name whispered among those in the know, is the unseen force behind many of the city’s musical endeavors. Despite his significant contributions, he stays removed from the spotlight, preferring the quiet hum of behind-the-scenes influence. Regardless, his presence remains enigmatic, known only to those privileged enough to collaborate with him. It’s a rare invitation to glimpse into his world, an offer extended to a select few, beckoning them to join the symphony of creativity he meticulously curates.

On Thursday, April 25th, 2024, the Toronto Caribbean Newspaper was welcome to the Acqua Supper Club, where the heartbeat of Toronto’s R&B and Soul scene will pulsate throughout the summer. Nestled in the heart of the city, the venue is a sanctuary where men and women will be able to gather for unforgettable evenings of soulful music and culinary delights.

At the helm of this musical journey is none other than DRU, a Juno Award-winning and gold record artist with a visionary passion for bringing back the magic of the 90s and 2000s R&B/Soul era. From timeless classics to contemporary hits, his performance was a journey through the soul, evoking nostalgia and stirring the spirit. Inspired to create something truly special, DRU collaborated with the immensely talented The Recipee Band to craft a show unlike any other. The Recipee Band, comprised of musical virtuosos: Jason Larmond, Otis Williams, Juwayon Clarke, and Jonathan Kerr, bringing over two decades of collective experience to the stage.

Drawing from a diverse range of genres and generations spanning from the 50s to the present, The Recipee Band serves as the backbone of Soul Nostalgic, infusing each performance with their unmatched musicality and passion. Soul Nostalgic isn’t just a concert; it’s a collective of exceptional talent coming together to create an immersive experience that will transport you back in time.

The night brought me through a ray of emotions, from high-energy dancing to electrifying live music, every moment of the show was designed to make you groove and feel good.

As the night unfolded, I found myself immersed in a world where time seemed to stand still, where the troubles of the outside world faded away, and all that mattered was the connection between music, food, and community.

I completely co-sign on this unforgettable journey. On May 30th, 2024, they are sharing this experience with the city again, so get ready to dance, sing along, and relive the magic of an era that continues to inspire and captivate audiences worldwide. This is more than just a concert; it’s the Soul Nostalgic Experience.

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Generational survival: Can our young people survive our generation?

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Photo Credit: Dr Obotdean

BY STEVEN KASZAB

The young people of the day are often criticized for not voting or participating in our electoral and public service efforts. Called bubble wrapped by some, those who attend schools of higher learning face challenges presented to them such as: professors who are not objective but espouse various ideologies of the left or right. Professorial prejudices often place the young student in academic limbo, encouraged to choose their professors preferred political outlook.

Raised to be democratically inclined, our youth often witness the actions of our establishments, which can appear to be very undemocratic. Terms like “Do as we say, not as we do,” hypocritical actions by the administration and police often lead our youth an openness towards misguided ideologies and movements of purported social change.

Our youth are encouraged to insert themselves into local, national and international politics, only to be witness to the horrible events, misinformation and the manipulative nature of global media who present their own interpretation of said events. Media is in fact a business manipulated by corporate and politically friendly owners. So, how can our youth truly believe what is in fact real, truthful, honest and objectively presented?

Our youth will often develop a sense of “Stockholm Syndrome” like attitudes, actions and desires. Desire to change a society that is obviously unacceptable but have an attitude to accept no other message except that which is given by their governments and institutions.

Our youth find the idea of voting in a system that remains the same, changes nothing and has players who all look and act alike to be a waste of time and effort. There will always be bad guys, taxes, raising prices, and diminishing opportunities. One’s outlook can be deflated, filled with nervous tension and even fatalism. War, addiction, premature deaths, abortion, women rights, democracy while supporting and doing business with dictatorships.

To be young, means to create, grow and aspire to positive things. Our national and global experience is seen as the opposite of that approach. There is simply: too much going on, too many people being harmed, too little opportunity, too much misinformation, too much greed to allow our young to develop in a well-balanced, mentally positive manner.

Mental health concerns for not only the youth, but our own as adults challenge us to change our ways, assist each other with an: empathetic, charitable manner, open minds and hearts.

Our young people are our treasure and future hope. If they are screwed up, so too are our future expectations and future goals. We have to continue to work on getting it right.

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The Black Business and Professional Association (BBPA) scandal: Is there room for corrections and restoration?

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BY MICHAEL THOMAS

After over 40 years of upholding a legacy of integrity and excellence, accusations and allegations of mismanagement of public funds and conflict of interest have raised its ugly head at the Black Business and Professional Association (BBPA).

As I investigated the meat of information surrounding this case it is easy to see why many buzzards are circling this prey. One of the main allegations I have noticed is that BBPA management awarded contracts to companies controlled by the former President and CEO, Nadine Spencer, without appropriate due diligence. Again, if this turns out to be true, an organization that has been in business for four decades must have seen this coming.

If the rules of receiving the funds, or government grants say that you must put out tenders to hire workers, then by all means do so. We have to remember that bad news travels twice the speed of good news.

There is more; on November 5th, 2021, the BBPA’s President at the time, Nadine Spencer became the CEO where she was allegedly paid in the range of $250,000. This was used to make the comparison that a bigger organization was thriftier with their money than BBPA, here is how. As an example, the Executive Director of Tropicana Community Services, a much larger non-profit organization, earned a salary of $163,671 in 2023.

My job in this article is not to throw BBPA under the morality bus, but to shed a bit of light on how as a people we must realize that all eyes are on us. Something I quickly spot is how many mainstream media took the opportunity to jump at this alleged scandal in BBPA, yet, for over four years now Canada has been led off the cliff, and because these same mainstream media folks were paid and funded, they looked the other way.

Do I condone the misuse of public funds? Hell no! If these allegations are proven to be true, should BBPA be held accountable? Hell yes!

That said, I went to BBPA’s website to have a bird’s eye view of what this organization is all about, and after reading I must say I was impressed.

I am hoping that BBPA realizes that to whom much is given, much is required.  An organization that has kept such a sterling reputation over the last four decades need not look only in its rearview mirror, but in blind spots as well.

Misappropriation of funds is no laughing matter regardless of how big or small an organization is, nor is conflict of interest. These are tantamount to having blood stains on white garments. If proven there needs to be public apologies, and most importantly “a complete cleaning of the house.”

The Boards of Directors of the BBPA released a statement on Friday, April 26th, 2024, in response to the call for their resignation in the midst of the allegations of financial mismanagement. The statement was addressed to BBPA members/supporters. It states, “We want you to know that we have been listening to the concerns that have recently been raised. The BBPA has hired independent professionals to undertake the appropriate reviews. The current BBPA Board has and continues to proactively take steps to strengthen governance and compliance practices. We are all dedicated to learning, improving, and continuing to work together through this process. We, as Directors, also want you to know that you can reach out to us any time for a conversation.”

Now in the case of Mr. Harry Jerome’s daughter, when one engages in asking an organization that has upheld her father’s name for four decades to quit using the name. I would like to think that this individual has solid proof of wrongdoing, or if proven wrong is ready to apologize as well, but with all these wolves circling the wagon. I understand her plight.

Starting from a small gathering that honored just six Black Canadian athletes who excelled at that year’s Commonwealth Games in 1983, to an organization that built an endowment fund of close to $600,000, and in the last 24 years the fund has granted over 650 scholarships totaling close to 2.5 million dollars, BBPA has a lot to be proud of.

However, if these allegations are found to be false, I am hoping that the accusing parties will do the right thing and apologize. On the other hand, if BBPA is found to be in the wrong, then the organization should be wise enough to rock the boat and throw those found guilty of tarnishing BBPA’s and Mr. Harry Jerome’s good reputation completely overboard.

According to news sources, BBPA has categorically denied all allegations. Whichever way this cookie crumbles, BBPA, your decision should and must make your people, and the late sprinter Mr. Harry Jerome’s name and family proud.

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