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June 2024

What an amazing time we had at the FSCDR 2024 Symposium! Big thanks to Dr. Lanetta Bronté-Hall for all she is doing to bring better care to Sickle Cell patients in Florida. Gratitude to Dr. Wally Smith and my friend Teonna Woolford for the fantastic organization of Grant Writing Institute!

Of course it was my special encouragement to see many Sickle Cell Healthcare Navigators from all over the country who graduated from SCMA and who were in attendance, representing their own organizations and states for patient advocacy!

I could NEVER do this work alone! Thank God for these Sickle Cell Navigators taking the course and running with it to do good around the country!

Hallelujah!

The good Dr. Wally Smith, the man that invited me to my first conference ever (FSCDR), where I was introduced to the community from a patient panel. He later invited me to the project ECHO Sickle Cell disease team in 2019 as the only doctor on the team who is also a patient.
The good Dr. Wally Smith, the man that invited me to my first conference ever (FSCDR), where I was introduced to the community from a patient panel. He later invited me to the project ECHO Sickle Cell disease team in 2019 as the only doctor on the team who is also a patient.
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Grabbing a quick chat with Dr. Lanetta Bronté-Hall. So grateful for all her work in Sickle Cell disease research, clinical trials and outpatient infusion centers. I am so happy that infusion clinics for Sickle Cell patients will be operating in Orlando! I can't wait to tag team Central Florida!
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I caught up with a few SCMA Navigators this weekend! While I did not grab pics with everyone (some I saw from far away, doing their thing, like DeMitrious Wyant), I was in a class with these three-(from left to right) South Carolina, Georgia and Nevada Sickle Cell Navigators in the house!
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I caught up with a few SCMA Navigators this weekend! While I did not grab pics with everyone (some I saw from far away, doing their thing, like DeMitrious Wyant), I was in a class with Dima. Massachusetts Sickle Cell Navigator in the house!
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Our girl Teonna Woolford from SC Red leading the discussion on Sexual Reproductive health for Sickle Cell disease.
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IHappy to have met Shauna Riley for the first time after our recent partnership. Looking forward to seeing what advocacy looks like for all of the partnerships from South Carolina. Kudos to Keosha Garrett for becoming the first SCMA Healthcare Navigator from South Carolina and spreading the message of our program to other communities there!
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André Marcel Harris calling on all CBOs to become a resource for patients battling sickle cell disease and behavioral health issues, as the mental and physical always affect each other. Some favorites addressed-medical gaslighting, careless words from providers to patients with Sickle Cell disease, and being quick to label a patient “non-compliant” without knowing the barriers to care. Loved this session. Much needed!
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Dr. Kim Smith-Whitley opening the important behavioral health and sickle cell disease discussion for André Marcel Harris
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June 2024

What a complete honor it was (June 2nd, 2024) to graduate another group of newly minted Sickle Cell Healthcare Navigators who are ready to advocate for Sickle Cell patients. Our keynote speaker Aisha Terry MD, MPH- president of the American College of Emergency Physician- spoke to the class confirming for the Navigators that they are on the right track with their knowledge and mission. We at SCMA are honored and privileged to do this work and to be alongside so many who do this work without complaining. To the Spring class of 2024: Congratulations! All the best to you!

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May 2024

We at Sickle Cell Medical Advocacy Inc., Kids Conquering Sickle Cell Disease Foundation, and the Levi Long Sickle Cell Association are overjoyed to be doing our first collaborative Diversity Blood Drive as community organizations here in Orlando, Florida. Please support us by bringing yourself and your black and brown friends to donate blood, as it turns out that there are certain distinguishing features in person of color that make their blood work better in people with Sickle Cell disease. So please help save our lives by using the QR code to schedule  a day and time to come and donate blood. 

 

Thank you for all the lives you will save by giving blood on May 19th!

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Grow Your Vision

Welcome visitors to your site with a short, engaging introduction. 

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May 2024

Dr. Simone Uwan of the Sickle Cell Medical Advocacy was honored to speak at the All-Florida Sickle Cell Disease Forum on Saturday, May 4, 2024. The event was a productive day of discussions with numerous dedicated leaders and advocates at the Florida State Meeting for Sickle Cell, organized by SCDAA St. Petersburg and hosted by CEO Mrs. Mary Murph. It was a pleasure to connect with advocates from various organizations and make new friends. Representative Daryl Campbell provided updates on the current status of Florida's funding for sickle cell disease research and programs. The meeting was a coordinated effort to foster collaboration among organizations in Florida. 

https://youtu.be/whncNmafEds

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April 2024

It was a pleasure to meet one of SCMA’s official partners, Allison Morris, who is the CEO of "We Reign Sickle Cell Corporation" located in north Florida (Pensacola), along with her wonderful family as they visited Orlando, FL.

 

As a virtual operation, we cherish the opportunities to connect with individuals like Allison, who is not only a graduate of SCMA's Healthcare Navigator program but also a passionate advocate for those battling sickle cell disease. 

 

During our time together, we talked, interviewed for her Sickle Cell documentary, and had the pleasure of meeting other amazing individuals like DeCarlo Garcia, the Vice President of We Reign Corporation.

 Overall, it was a fantastic evening!

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April 2024

It is now official! We are partners with the "On The Air Sickled" podcast, which is hosted by Mr. Otmar Donald, a Sickle Cell Thriver and certified Sickle Cell Healthcare Navigator. This podcast serves as the official voice and platform for Sickle Cell Medical Advocacy Inc. We are thrilled to collaborate with On The Air Sickled to shift the dialogue and share genuine stories of individuals battling Sickle Cell disease. Our goal is to also highlight the experiences of caregivers whose lives are profoundly impacted by this condition. We look forward to making “good trouble” together!

Here is our first public service announcement together:

February 2024

Yesterday February 29th, 2024. I had an interview with NPR Orlando. Unlike my previous NPR segment, this one was pre-recorded. Nevertheless, it was fulfilling to discuss Sickle Cell disease, Sickle Cell Medical Advocacy Inc, and our efforts to educate healthcare providers about the disease and bridge the gap of ignorance among them.

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Month of September

Coming in September 2023 with Orientation on August 30th 7pm EST 2023, is

our Sickle Cell Health Excellence Learning Program! 

Offered 100% free! 

For patients with Sickle Cell disease only!

Offer within USA only.

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Sickle Cell Medical Advocacy Incorporated is honored and excited to partner with the Sickle Cell Disease Association of America (SCDAA) as we represent the common mission of uplifting our Sickle Cell community here in Orlando and central Florida.

The SCDAA, formed in 1971 and headquartered in Baltimore, Maryland, is the oldest Sickle Cell organization in the United States. This nonprofit organization is dedicated to supporting research, education, and funding of individuals, families, and those impacted by Sickle Cell disease.

Our missions perfectly align because at Sickle Cell Medical Advocacy Inc.(SCMA) our mission is to advocate for transformative and quality healthcare for patients living with Sickle Cell disease. We educate and train patients, caregivers, and healthcare providers as part of this mission. 

We look forward to working with SCDAA and their national network of community based organizations (CBOs) to create and enforce a cohesive national SCD Healthcare Navigator plan for people with Sickle Cell disease. 

Month of August 

 

MAT graduation 2023

 

Hello everyone,

It’s graduation time again at SCMA, and we are requesting the honor of your presence on Sunday August 27th 2023 at 6:30pm in the evening. We want to celebrate our newly minted medical advocates from the Medical Advocacy Training Program after an intense term of learning. Now they are well able to medically advocate for other patients in their communities with Sickle Cell disease, and we are proud of their selflessness and hard work. This is truly a “For-Us-By-Us” initiative!

 

Please join us in celebration. We look forward to seeing you!!

Zoom ID: 849 1283 2748

PW: 294937

 

 

Aniekan Uwan 

and Simone UwanMD 

Co-Founder

Month of August 

 

MAT graduation 2023

 

Hello everyone,

It’s graduation time again at SCMA, and we are requesting the honor of your presence on Sunday August 27th 2023 at 6:30pm in the evening. We want to celebrate our newly minted medical advocates from the Medical Advocacy Training Program after an intense term of learning. Now they are well able to medically advocate for other patients in their communities with Sickle Cell disease, and we are proud of their selflessness and hard work. This is truly a “For-Us-By-Us” initiative!

 

Please join us in celebration. We look forward to seeing you!!

Zoom ID: 849 1283 2748

PW: 294937

 

 

Aniekan Uwan 

and Simone UwanMD 

Co-Founder

Month of August 

 

MAT graduation 2023

 

Hello everyone,

It’s graduation time again at SCMA, and we are requesting the honor of your presence on Sunday August 27th 2023 at 6:30pm in the evening. We want to celebrate our newly minted medical SCD Healthcare Navigator from the SCD Healthcare Navigator Training Program after an intense term of learning. Now they are well able to medically advocate for other patients in their communities with Sickle Cell disease, and we are proud of their selflessness and hard work. This is truly a “For-Us-By-Us” initiative!

 

Please join us in celebration. We look forward to seeing you!!

Zoom ID: 849 1283 2748

PW: 294937

 

 

Aniekan Uwan 

and Simone UwanMD 

Co-Founder

Month of July 2023

 

Back from Atlanta supporting “Be The Match-Cheek Week” and the effort to increase participation from communities of color as bone marrow donors.

It was an honor to share my journey as a medical doctor and a patient with a disease currently cured only by a bone marrow transplant.

 

We got to meet some other Sickle Cell navigators living in Atlanta who attended the event! THREE of them were also medical navigators trained by Sickle Cell Medical Advocacy Inc! 

July 2023

This month we start another cycle of our SCD Healthcare Navigator Training Program!

 

MAT is back and will be starting on June 25th 6:30-8pm. For those who agree to stay with SCMA to advocate for patients enrolled with SCMA, the course is FREE to you. For those training with SCMA on behalf of your organization the cost is $550 total-$500 for the class and $50 for your syllabus, uniform(T-shirt) and your certificate of completion. 

 

Those who advocate for SCMA afterwards receive a $50 stipend or gift card for each advocacy event, as a thank you for your compassion and dedication to the patient in need.

June 2023

Honored to have been a speaker for a World Sickle Cell Day event in Nigeria, West Africa. It was hosted by Damilola Ajibade of “Damilola Sickle Cell Foundation”. 

Great conversation and education about “Achieving Global Health Equity in Sickle Disease" 

June 2023

It was a pleasure to support this organization for World Sickle Cell day 2023 yesterday, by doing a 30 minute educational piece of how far we have come with therapy options for SickleCell Disease.

 

https://youtu.be/Y_2A71CpHjc

June 2023

 

Wonderful chatting with Mrs. Regina Hartfield, president of Sickle Cell Disease Association of America (SCDAA), the first Sickle Cell disease organization established in the USA. She met with us to share that our nonprofit, Sickle Cell Medical Advocacy Inc.,  was approved as a partner organization with SCDAA! Congratulations SCMA! 

 

https://youtu.be/Y_2A71CpHjc

June 2023

Appreciate Foundation for Sickle Cell Disease Research (FSCDR) with Dr. Lanetta Bronté-Hall  and Miss Kyla Thorpe for allowing me to co-chair the patient panel, and select Hynees Garcia and Cynthia Curinton James both graduates of the Medical Advocacy Training Program, to speak and share their unique journeys with Sickle Cell disease.

 

 

Thank you to Kyla Thorpe and the team at Foundation for Sickle Cell Disease Research, for putting together another amazing year of international research and education symposium!

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MAT is back on Sunday, June 25th and will run every Sunday until August 27th at 6:30-8pm 

For those who agree to stay with SCMA to advocate for patients enrolled with SCMA, the course is FREE to you. You pay only for your syllabus, uniform(T-shirt) and your certificate of completion ($50)

For those training with SCMA on behalf of your organization the cost is $550 total-$500 for the class and $50 for your syllabus, uniform(T-shirt) and your certificate of completion. 

Those who advocate for SCMA afterwards receive a $50 stipend or gift card for each advocacy.

Register using the "Sign up to be an advocate" envelope link at the bottom of every page.

Can we create an intergenerational space for men to come together to build a foundation of love and encouragement that promotes health? YES WE CAN!

This is for all male warriors (those living with Sickle Cell Disease).

 

The place for male sickle cell warriors of all generations. Six chances to win $50 cash! Be a brotha, bring a brotha!

Register here: https://www.eventbrite.com/e/brotherhood-of-warriors-tickets-648221837967

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ALL ARE WELCOME!!! Yes international too!:)
These are monthly recurring events. Please use the same zoom link each time.

Holistic Management of sickle cell disease occurs on the first Sunday of each month. Mark your calendars!

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December 19 2022

It was an honor to receive the “Champion of Impact” award on behalf of the team at Sickle Cell Medical Advocacy Inc. at The Gift of Hope Celebration last night. Dr. Wanda Whitten-Shurney of the Sickle Cell Disease Association of America (SCDAA) was our keynote speaker. We received the award for  “medical advocacy and education” of the Sickle Cell community. I would like to thank Carla Lewis of Kids Conquering Sickle Cell Disease Foundation, Inc. for this honor.
I received it on behalf of all of us, so here’s to the SCMA team!!!”

September 24 2022

It was a privilege to represent SCMA’s advocacy work and speak with the Orlando group of patients and caregivers at the Kids Conquering Sickle Cell Disease foundation
“Education and Empowerment” luncheon on September 24, 2022. Thank you to Mrs. Carla Lewis, their founder and CEO for such a great event!

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On August 19th it was an honor and privilege to work with Uriel E Owens SCDA of the Midwest and represent on the patient panel round table as a physician and patient dealing with sickle cell disease and pain management issues. It was a delightful panel of representatives who showed the truth of sickle cell disease and the resilience of the Sickle Cell warrior.

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August 19 2022

It was an honor for SCMA to collaborate with the Sickle Cell Community Consortium on their 9th Annual Warriors Convention to speak on several topics. Much gratitude to those behind the scenes who worked to make these two the highly attended sessions!

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July 21-22 2022
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June 10 2022

SCMA thanks Dr. Lanetta Bronté-Hall, MD, MPH, MSPH , the founder & CEO of Foundation for Sickle Cell Disease Research (FSCDR) for the invitation to speak at their 16th annual symposium as a guest speaker on the patient panel. The conversation centered around clinical trials and why it is important for patients with Sickle Cell disease to participate in these trials. We need more Sickle Cell disease specific medications being researched for our community. It was indeed a great Symposium! 

SCMA’s physician Dr. Simone collaborated with  Sickle Cell Foundation of Minnesota, by doing a PowerPoint presentation to our Sickle Cell Community. She showed how the type of IV fluids they are given when in a crisis makes a difference, and explained what the correct IV fluids  in a Sickle Cell crisis would be.

June 28 2022
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Celebrating world SickleCell day!

Our world SickleCell day event was

celebrated by inviting our national and international organizations to

join the event.  We welcomed organizations from Ghana and various parts of the Caribbean. We started by introducing the community to SCMA’s new doctor, Dr. Joanna Pascal who is also a caregiver to a toddler with Sickle Cell disease. Dr. Pascal is originally from Grenada. Our featured event was a presentation by Dr. Simone on how to self- advocate in the emergency room for urgent care when in a pain crisis.

June 19 2022
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Tamika Moseley, public speaker and author of “Sickle Cell Natural Healing: A Mother's Journey” joins forces with Sickle Cell Medical Advocacy Inc. to bring Holistic Pain Management options for Sickle Cell disease March 20th 2022 at 4pm EST. This is one of the upcoming Patient Education for Prevention (PEP) programs being brought to you this spring by SCMA.

https://www.eventbrite.com/e/holistic-pain-management-for-sickle-cell-disease-tickets-288816898117?ref=eios

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March 20 2022

Interested on becoming a Medical Advocate?...

 

Please email us OR simply fill out a  “contact us” form located under the “contact “ tab to inquire about this class.

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Read More

To Caregivers & Sickle Cell Disease Patients...

Free nutritional counseling, mental health counseling & holistic pain management counseling services available...!

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Read More

To inquire about Dr. Simone Uwan for speaking events, please contact:

md@sicklecellmedicaladvocacy.org

Or call:

407-906-3019

TRANSFORMATIVE and QUALITY healthcare for Sickle Cell patients.

Last Congratulating class

Congratulations to SCMA’s Medical Advocacy Training program graduates for becoming newly minted certified medical advocates! We appreciate your commitment to the Sickle Cell community and your desire to help advocate for a patient in crisis as they go to the hospital. 
All the best on your journey!

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A recording of the graduation is available at a suggested donation price of $25. Please contact support@sicklecellmedicaladvocacy.org

March 22 2023

Today we participated in National Sickle Cell disease Policy Forum and virtually spoke to several representatives and senators from Florida. We met with the liaisons from the offices of Senator Marco Rubio, representative Daniel Webster, representative Darren Soto, and Senator Rick Scott.  We advocated for them to include requests in Fiscal Year 2024 for:

 

 1. $15 million in appropriations for HRSA SickleCell disease treatment demonstration program for the fiscal year 2024.

 2. $25 million in appropriations for the CDC SickleCell data collection program.

 

and to :

 3. co- sponsor the SickleCell disease, comprehensive care act, which was re-filed in the House and Senate last night.

 

Grateful to understand the needs of the Sickle Cell community and join arms with fellow advocates to implore our elected officials to represent our needs.

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