GASCDO In Person Sickle Cell Disease Conference 2024

Breaking Global Barriers, Building Bridges:
Uniting for Sickle Cell Care
Chair of the Board of Directors of GASCDO Speech 2024

Undersecretary of the Ministry of Health for Planning and Health Education- His Excellency Dr. Ahmed Bin Salim Al Mandhari.
President/CEO of the Global Alliance of Sickle Cell Disease Organizations (GASCDO) – Biba Tinga
President of the Oman Hereditary Blood Disorders Association
(OHBDA) – Dr. Thuraiya Saif Al Hosni
Vice Chair of the Board of Directors of GASCDO- Ade Sawyyer
Secretary of the Board of Directors of GASCDO –
Rene Esdaille
Board Member and Head of the Membership Committee of GASCDO- Gautam Dongre
Vice Chair of (OHBDA) and Board Member of GASCDO and Chair of our Scientific Committee – Prof. Salam Al Kindi

Moderator – Dr. Ahmed Al Mamari
Leaders of our Voting National Member Organizations; Our Patients; Our Care Givers; Our Healthcare Professionals; Representatives of the Pharmaceutical Industry; Stakeholders; Specially invited guest, Ladies and Gentlemen
Assalamu Alaikum
May the Peace and Blessings of Almighty God be upon you
A Pleasant Good Afternoon

I say to you today on Behalf of the hardworking GASCDO Board of Directors:

“Welcome to the Exceptional”
“Welcome to Oman”
As I entered the Muscat Airport on the wall read”

It was said by the Prophet Muhammad (saws):

If you were to come to the People of Oman, they would never insult or abuse you”
Indeed, all our International Guest present here would agree that this statement is indeed indicative of the kind hospitality being showed to us by the People of Oman, our Host Nation of this GASCDO Conference 2024.

As I look around in this room I can see different Countries across different Continents. We have in the room: USA; Canada; UK; Germany; Kenya; India; Tanzania; Trinidad and Tobago; France; Bahrain; UAE and of course Oman. Today, you are the example of what a UNITED Global Sickle Cell Disease (SCD) space looks like.

The Honourable Mr. Nelson Mandela said “Education is the most powerful weapon which you can use to change the world.

On behalf of the Board of Directors of GASCDO, It is a great honour and privilege to present to you:
GASCDO/OHBDA Conference titled “Breaking Global Barriers, Building Bridges: Uniting for Sickle Cell Care”
Langston Hughes, American Poet and Social Activist said, “Hold fast to dreams, for if dreams die, life is a broken winged bird that cannot fly.”
We are all very proud to announce to you GASCDO would be 5 years in January 2025. As the first Global Sickle Cell Disease Organization to last for 5 years and still the ONLY existing Global Sickle Cell Disease Organization (Dedicated 100% to the Global SCD Community), GASCDO continues to grow and expand exponentially as we Speak. Look around in this room and you would see the strength of GASCDO.

As our Mission starts off: TO INSPIRE HOPE; My friends INSPIRE HOPE we must. For way too long the SCD Community has been without this GLOBAL SUPPORT. For way too long YOU would have had NO WHERE to TURN For way too long YOU have had no GLOBAL AVENUE to VOICE your CONCERNS about being called DRUG USERS and DRUG ABUSERS; SICKLERS. YOU are HUMAN too; YOU have the RIGHT to not like a TERM or feel Offended; IT is your RIGHT. YOU, THE SCD COMMUNITY; this is your SPACE; GASCDO belongs to YOU.
We at GASCDO have made this purposeful effort to ensure that we were able to execute this Conference keeping You the Patient, the Centre of all decision making. We want you to be treated like Kings and Queens; Prince and Princesses. You deserve the best. We at GASCDO have done everything in our Power to make You the Patient, the Focus of this Conference to the best of our abilities. We handpicked the Hotel; Conference Rooms; Hotel Rooms; even the Menu’s, with You the Patient in Mind. The President of OHBDA Dr. Thuraya was adamant to our Board that the Conference Agenda needed to revolve around the Patient and Patient Organization issues. In the Coming days you will see we have delivered on that Promise.
As John Lewis said “Never, ever be afraid to make some noise and get in good trouble, necessary trouble.”

What is key now for GASCDO is to continue building; solidifying and expanding.

Some are asking WHAT CAN GASCDO really DO for ME?
I recall the words of the late former US President John F Kennedy when he said:
Ask not what you Country can do for you.
Ask what you can do for your Country!

Rephrasing:

Ask not what GASCDO can do for you.
But ask What WE all can do to Strengthen GASCDO.

Michelle Obama said, “We learned about gratitude and humility – that so many people had a hand in our success.”
I want to take this Opportunity to thank Almighty God for all HIS countless blessings in putting this Conference Together from start to this Point.
I want to sincerely Thank the Patron of this Conference: Undersecretary of the Ministry of Health for Planning and Health Education- His Excellency Dr. Ahmed Bin Salim Al Mandhari for honouring us with His Presence.

I want to say a special Thank You for
I want to Thank the Meeting Minds Team for the successful Organization of this Conference.
We must acknowledge the great works put in by the Hotel Staff led by Ionela and her team, to ensure this Conference is executed on point.
We must acknowledge the Leaders of all our Voting Members who have the made the effort to attend this Conference in Oman.
I must tell you that OHBDA is a founding member organization of GASCDO and has been an excellent Host and a strong Partner for this Conference. I want to thank all Members of the OHBDA for all their Support in the organization and execution of this Conference.
I must express sincere Gratitude to all the Pharmaceutical Companies that have worked hand in hand with us to not only ensure the Successful Execution of this Conference but the Operations of GASCDO which include but not limited to:
Novo Nordisk; Agios; Vertex; Roche; Masters and Sanofi.
We sincerely thank you for all your Support over the last 5 years of GASCDO.

To all our Specially Invited Guest without you this Conference would not have been as successful as it is turning out to be.

To all our Patients and Caregivers: Globally; Regionally and Locally we sincerely thank you for making this remarkable effort and sacrifice to be with us Today. Your presence Today shows that GASCDO is getting stronger and stronger as the Years go by.
At this Point I want to acknowledge 7 Persons who have made Significant Contributions for this Conference as well as to GASCDO over the last 5 years:

I start in no specific Order:

Prof. Salam Al Kindi

Is the current Vice Chair of (OHBDA) and Board Member of GASCDO and Chair of our Scientific Committee. Prof. Salam graduated from Trinity College (Dublin Ireland) in 1993 and completed His general medicine as well as HIS haematology/oncology training in Dublin, Ireland. Additionally, he did his Training in Bone Marrow Transplantation at the Fred Hutch cancer centre in Seattle USA. In 1999 he joined the Sultan Qaboos University and in 2005 was appointed as head of department of haematology for a period of 10 years. Indeed Prof. Salam is an invaluable leader and advocate at GASCDO. He plays a critical role in guiding GASCDO’s scientific direction, fostering collaboration within the Global SCD Community. His strong dedication and commitment to the improvement of our Patient Lives makes HIM an essential part of GASCDO’s Mission. We sincerely Thank Prof. Salam for HIS unwavering support and dedication to this Conference.
I now present this Token of Appreciation to GASCDO’s Board Member and Head of the Scientific Committee: Prof. Salam Al Kindi.

Mr. Ade Sawyyer

Ade is the current Vice Chair of the Board of Directors of GASCDO. He is one of our Senior Global Sickle Cell Disease Warriors and currently is the eldest Warrior in the Room. He has acted as a peer support counsellor in the first sickle cell clinic that operated in Ghana in the 1970s, he also helped to set up the Sickle Cell Circle in Manchester in the early 1980s. He is part of the Patients Support Forum at Kings College Foundation Hospital, London where he attends the clinic, an active member of the Croydon Sickle Cell and Thalassemia Group in Croydon and part of the Haemoglobinopathy Coordinating Centre Patient Voice Group and a member of the Sickle Cell Society UK.
Ade’s background qualifications are in Business Management. After obtaining a BSc. Administration degree in Management in Ghana, he worked in different job roles in banking, systems analysis and management of small businesses. Before emigrating to the UK to complete a full-time MBA programme at Alliance Manchester Business School in 1982.
I now call on Ade Sawyyer, Vice Chair of GASCDO to collect his token of Appreciation.

Rene Esdaille

René Esdaille is the Current Secretary of the Board of Directors of GASCDO. She has worked in the graphic design industry for more 15 years. She successfully pursued a Bachelor of Arts in Graphic Design, graduating from the College of Science, Technology & Applied Arts of Trinidad and Tobago (COSTAATT)’s Ken Gordon School of Journalism and Communication Studies in 2015 with Honours (Magna Cum Laude) and was the valedictorian. René also has an online Diploma in Advocacy from the Catholic University of Salta, Argentina.

As a sickle cell warrior herself, René understands the importance of the patient’s voice and knowledge about the condition in successfully advocating for the global SCD community. She is also the Current President of the Society for Inherited and Severe Blood Disorders Trinidad and Tobago (SISBDTT).
I now call on the Secretary of GASCDO to collect her Award.

Ms. Biba Tinga

Biba Tinga is the current Interim CEO/President of GASCDO. She also holds the position of President/Executive Director of the Sickle Cell Disease Association of Canada/Association (SCDAC)
She is a mother of a Warrior, she has a unique understanding of the needs of the children and families dealing with the disease.
She brings a wealth of experience and a lifelong dedication to improving conditions for those living with sickle cell disease.
For more than 10 years, she has leveraged her experience in advocating for new drugs, the risks associated with the lack of treatment options and efforts to implement strategies to better advocate on behalf of families.
We sincerely Thank our CEO for her long hours; sacrifice and tireless dedication and commitment in ensuring this successful 1st GASCDO In Person SCD Conference since our Amsterdam formation in 2020.
I now call on the CEO/President of GASCDO to collect her Token of Appreciation.

Dr. Thuraya Saif Al Hosni

She is the President of the Oman Hereditary Blood Disorders Association (OHBDA). Thuraya, a leader and Sickle Cell Warrior has played a significant role to the planning; organizing and advocating for this Conference. She has worked with CEO, Conference Planners, Meeting Minds for the last number of months over several Meetings.
For her dedication and commitment to this Conference I call on Dr. Thuraya Saif Al Hosni to collect this Token of Appreciation

Ms. Simbo aka Our Accountant
Ms. Simbo has been with the GASCDO for the past 4 years now serving in her Capacity as the Accountant of GASCDO and has rendered relentless dedication and commitment to the Success of the Organization. I now call on our CEO/President to collect this Token of Appreciation on behalf of Ms. Simbo.

Alvin Merchant

Alvin, Sickle Warrior, has Turned 50 this year. He has endured 3 hip replacements, a shoulder replacement; liver failure, ACS more than 30 times and countless transfusions. Despite all these extraordinary challenges Alvin has been dedicated and committed to the cause of GASCDO. Alvin is well known for being the Moderator for many of GASCDO’s online Webinars. He is truly deserving of this Recognition as a Global Sickle Cell Warrior.
I now call on another fellow Canadian Sickle Cell Warrior Ulysee Gurrier and his Good Friend to collect this Award for him.
This concludes my part, I thank you all and Wish you a most Enjoyable Conference 2024.