Sickle Cell Summit MKE

A collaborative blueprint for action in Wisconsin.

2022 Sickle Cell Summit MKE


Versiti is proud to present the inaugural Sickle Cell Summit MKE, which brings together community organizations, hospitals, advocates and more to share resources, treatments and protocol updates, and broaden awareness and perspectives from clinical and community viewpoints.

Through this summit, we hope to align members of the community to make an impact on and improve patient outcomes.

Date: Friday, Oct. 28, 2022
Time: 8 a.m. – 3 p.m.
Location: UWM Golda Meir Library

8:15-8:25am

Welcome & Opening Remarks

Versiti 

Opening Statements 

Speaker 2

8:25-9:40am 

Track 1: Clinical Presentation & Panel Discussion


Dr. Brandow
 Presentation Title: Comprehensive Care for Children with Sickle Cell Disease in Wisconsin

Adult SCD Hem Rep? 

Dr. Treml 
Presentation Title: Blood transfusions and exchanges in sickle cell disease 

Dr. Brousseau 
Presentation Title: Emergency Department Use in Sickle Cell Disease 

 

Panel Q&A

9:40-9:45am 

Transition & Break (5 mins)

9:45-10:30am 

Track 2: Patient panel discussion

Panel 

Orobola ObaFemi Akinmoladun
Patient Advocate, Community Organizer

James Griffin
Patient Advocate, Author

10:30-10:35am

Transition & Break  (5 mins) 

10:35-11:35pm 

Track 3: Research and curative therapies

 

Dr. Eapen 
Presentation title: Cure for Sickle Cell Disease

Stephanie Jones 
Presentation Title: Things to Consider and Questions to ask before joining a research study 

  

Panel Q & A

11:35-12:35pm

Lunch N’Learn

12:35-12:55pm 

Track 4: Mental health impact of SCD Patients 

Panel 

Dr. Ong 
Presentation Title: Identifying mental health needs of young adults with SCD.

Q&A

12:55-1:20pm 

Track 5: Policy and Advocacy

Panel

Emma Andelson
Presentation Title: Understanding Economic Burden of SCD Through Advocacy & Policy

Q&A

1:20-1:45pm 

Track 6: Diversity in Blood 

 

Greg Asmus 
Presentation Title: The Remarkable Ro Program

  

Q&A 

1:45-2:00pm 

Call To Action

 

Closing remarks  

 

Orobola ObaFemi Akinmoladun (Femi Akinmoladun)

Patient Advocate, Sickle Cell Warrior

Femi is 30 years old from Kansas City, Mo. Femi comes from a big family of five brothers and one sister: his parents being from Nigeria. He is the only one within his family to inherit Sickle Cell Disease (specifically SS). He has been in Milwaukee since 2019, and currently works as a remote national/state field organizer for an organization called WorkMoney. As a first generation Nigerian American Femi knows the importance of creating opportunities of connection; after all, we are only who we are thanks to other people’s presence and involvement in our lives. Femi commits everyday to live into his last name Akinmoladun, which means a warrior who defends the weak. He stays involved as an advocate with Sick Cells, serves on his local Community Advisory Board, and finds himself busy in grassroots movements like the Milwaukee Alliance Against Racist and Political Repression and Wisconsin Poor People's Campaign. Hobbies are reading, foodie trips with friends, and playing tennis. Faith, hope, and love is the way Femi lives his life.

 

Emma Andelson

Professional Title: Program Manager at Sick Cells

Presentation Title: Understanding Economic Burden of SCD Through Advocacy & Policy

Emma Andelson is the Program Manager for Sick Cells. As Program Manager, she leads Sick Cells’ government affairs and policy outreach initiatives, creating connections across various stakeholder groups and bringing Sick Cells' patient-centered approach to her work. She is also able to use her background in Media & Cultural Studies to craft new and creative social media campaigns to reach diverse audiences across Sick Cells' platforms. Emma earned her Master’s in Public Administration at the University of Illinois – Chicago with a concentration in educational policy.

 

Greg Asmus

Professional Title: Field Marketing Manager, Transfusion Medicine

Presentation Title: The Remarkable Ro Program

Greg works as Field Marketing Manager for Transfusion medicine for Versiti since 2019. His role is to ensure that hospital partners have the blood necessary for patient care. He has been the lead to the Ro and rare donor blood program focused on increasing the supply of rare and uncommon units. Greg has a background in organ and tissue donation with a Master’s in Human Donation Science from the University of Toledo.

 

Dr. Amanda Brandow

Professional Title:
Professor of Pediatrics
Director, Comprehensive Sickle Cell Disease Center
Section of Hematology/Oncology/Bone Marrow Transplantation
Department of Pediatrics
Medical College of Wisconsin

Presentation Title: Comprehensive Care for Children with Sickle Cell Disease in Wisconsin

Dr. Brandow is a Professor of Pediatrics at the Medical College of Wisconsin in the section of hematology/oncology/bone marrow transplantation and the Director of the Comprehensive Sickle Cell Disease Center. Dr. Brandow is a physician-scientist who provides care for children with sickle cell disease and other non-malignant hematologic conditions and conducts clinical and translational research focused on understanding the pathophysiology of acute and chronic pain in children and adults living with sickle cell disease. Specifically, her lab is investigating the underlying neurobiology of sickle cell pain with a focus on inflammation, the microbiome and nervous system sensitization. To support her research, Dr. Brandow was a past recipient of an NIH/NHLBI K23 Mentored Patient-Oriented Research Career Development Award, an American Society of Hematology Scholar Award and she is currently the principal investigator on an R01 from the NIH/NHLBI and an R61/R33 NIH/NINDS HEAL award in the Discovery and Validation of Biomarkers, Endpoints, and Signatures for Pain Conditions program, and multi-principal investigator on a U01 form the NIH/NHLBI. Dr. Brandow is also active in advocating for comprehensive pain management for individuals living with sickle cell disease at the national level where she served on the US Department of Health and Human Services Pain Management Best Practices Inter-Agency Task Force and as Chair of the American Society of Hematology Evidence Based Sickle Cell Disease Management Guidelines for Acute and Chronic Pain. Dr. Brandow is an Associate Editor of the Journal of Pediatric Hematology/Oncology and is on the Selected Populations Section editorial board of the journal Pain Medicine.

 

David C. Brousseau MD, MS

Professional Title:
Professor of Pediatrics
Chief, Section of Pediatric Emergency Medicine
Children’s Wisconsin/Medical College of Wisconsin
Assistant Dean for Scholarly Activities, MCW
Jon E. Vice endowed Chair for Emergency Medicine

Presentation Title: Emergency Department Use in Sickle Cell Disease

David Brousseau is section chief of Pediatric Emergency Medicine at the Children’s Wisconsin/the Medical College of Wisconsin and a clinical researcher with a focus on improving the care of children with sickle cell disease. He has advanced training in epidemiology and has completed multiple funded projects investigating care in children with sickle cell disease, utilizing both randomized clinical trials and observational studies. He completed a federal Career Development Award and was the study PI of a NIH R01 funded randomized double-blind placebo-controlled pain trial for sickle cell pain treatment based in the emergency department. More recently, he is the study PI on an NHLBI U01 hybrid effectiveness-implementation trial to improve guideline adherence for the care of children presenting to the emergency department with a painful crisis related to their sickle cell disease. He has over 110 publications, including first author publications in JAMA and Blood. He is married and has three children; the oldest graduated from college last year while his twins are juniors at Notre Dame and the University of Wisconsin-Madison.

 

Dr. Mary Eapen

Professional Title:
Professor of Medicine
Division of Hematology/Oncology,
Department of Medicine,
Medical College of Wisconsin

Presentation Title: Cure for Sickle Cell Disease

Dr. Mary Eapen completed her Residency and Fellowship in Hematology/Oncology and Transplantation at the University of Minnesota, Minneapolis. Her research focuses on use of alternative donor transplantation for malignant and non-malignant hematologic diseases. In collaboration with Dr. Joshua Field, she has developed a clinical program aimed at offering cure for sickle cell disease through transplantation, gene therapy and gene editing.

 

James Griffin

Title: Patient Advocate, Sickle Cell Warrior

Presentation Title: Understanding Economic Burden of SCD Through Advocacy & Policy

James Griffin was diagnosed with sickle cell at the age of two. He is a speaker, sickle cell advocate, and a published author; widely known for his book Breaking Silence: Living With Sickle Cell Anemia. In 2012, he began advocating, since then he has been using his voice to make an impact to help change the lives of others. As a sickle cell advocate his goal is to improve the quality of care for patients within the medical systems around the world, and eliminate the stigma and biases associated with sickle cell.

Some of James advocacy work includes speaking at events for Vertex Pharmaceuticals, Global Blood Therapeutics, the Sickle Cell Disease Association of America, Banner University Medical Center in Phoenix Arizona, and on Capitol Hill in front of legislators for Rare Disease Week and Rare Across America. He has also spoken at the gene editing conference CRISPRcon Midwest, and at the University of Wisconsin-Madison. He was born in Milwaukee Wisconsin, and he currently serves as a board member for Versiti Blood Center of Wisconsin, and in September 2022 he joined the RDLA Advisory Committee.

 

Stephanie Jones

Professional Title: Manager, Clinical trials and Research Office - Versiti

Presentation Title: Things to Consider and Questions to ask before joining a research study

After earning my bachelor’s degree from St. Norbert College, I accidentally “fell” into clinical research in 2012 while pursuing a healthcare career in inherited diseases and disorders. This led me to obtaining my Master’s degree from the Medical College of Wisconsin in 2016 in Clinical and Translational Science. In 2019 I was privileged enough to join Versiti as the supervisor for their Clinical Trials and Research Office which includes a team that focuses on Sickle Cell Disease. What I love about clinical research is that it allows us to provide hope to our patients today while ensuring a better future for our patients tomorrow. By far the most rewarding thing about my career is seeing a patient thrive while on a clinical study and be able to live their life not their disease.

 

Lee Za Ong, PhD, CRC, LPC

Professional Title:
Assistant Professor
Department of Counselor Education and Counseling Psychology
Marquette University

Presentation Title: Identifying mental health needs of young adults with SCD.

Dr. Ong is an assistant professor in the Department of Counselor Education and Counseling Psychology in Marquette University. She earned her PhD in rehabilitation psychology from UW-Madison. Her current research agendas include promoting positive mental well-being using the peer support model and advocating social and health equity of underserved communities, especially among ethnic minority individuals with disabilities. Funding sources for her research have included Rehabilitation Administration Services, Health Resources and Services Administration, and National Collegiate Athletic Association.

 

Dr. Angela Treml

Professional Title:
Medical Director, Versiti Wisconsin
Associate Professor, Department of Pathology, Medical College of Wisconsin
Medical Director, Blood Bank, WDL and Froedtert Hospital

Presentation Title: Blood transfusions and exchanges in sickle cell disease

Dr. Angela Treml is a Wisconsin native from the Appleton-Green Bay area who obtained and bachelor's degree from the University of Wisconsin-Milwaukee. She then went to medical school at the Medical College of Wisconsin. Dr. Treml specialized in Pathology and Transfusion Medicine completing her residency at Cedars Sinai in Los Angeles, CA and fellowship at Johns Hopkins Hospital. She came back to Wisconsin in 2017 and oversees the blood bank and apheresis service at Froedtert Hospital.

22 Sickle Cell Summit Agenda Flyer

Sickle Cell Summit MKE Agenda Flyer

Download the event flyer with the complete agenda for the Sickle Cell Summit MKE.

22 Sickle Cell Summit Flyer

Sickle Cell Summit MKE Flyer

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Importance of Diverse Donors
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