The IBC Learning Academy is a rigorous course with the objective of training devoted Inflammatory Breast Cancer advocates.

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It is known that rare disease advocacy can improve patient outcomes while bridging the gap between patients/caregivers, healthcare providers, policy makers and the scientific community. Our goal is to reach a diverse target audience of patients and professionals with a passion for improving the lives of those affected by IBC. Trained advocates will be empowered to promote the unique needs of IBC patients by improving access to specialty care, increasing education around clinical trials, and participating in lobbying. Advocates may also serve on decision-making boards of local, state and national organizations, committees and Institutional Review Boards.

Objectives

  1. Attendees will have a clear understanding of what makes IBC different from other breast cancers, from the biology and treatment perspective.
  2. Attendees will become more educated about what is needed for access to specialty care, and how to lobby insurance to allow access to specialty care if it is out-of-network.
  3. Provide scientific training for patient advocates to be informed about how they could serve on grant review committees to assist researchers obtain crucial funds for research.
  4. Educated patients will become empowered to educate their medical teams about unique IBC needs and be able to understand the latest research.
  5. Encourage networking to facilitate effective fundraising for research into IBC

TOPICS

Part 1 – Inflammatory Breast Cancer (IBC) Core Education Topics
Moderator Dr. Chandra Bartholomeusz

Introduction to the IBC Learning Academy (Kelly Gonzalez FNP-C)

Lesson 1 – What is cancer? How does cancer research work? (Dr. Chandra Bartholomeusz [Q&A])

Lesson 2 – IBC Background and History (Terry Arnold)

Lesson 3 – IBC Epidemiology (Wintana Balema, Graduate Research Assistant)

Lesson 4 – IBC Uniqueness of Presentation  (Dr. Wendy Woodward, Rucha Depina, Christen Boise)

Lesson 5 – IBC Staging and Genetics

  • Staging and what it means? Stage 4 IBC – how is it different? (Dr. Mediget Teshome)
  • IBC genetics and general predisposition genes ie BRCA 1 and BRCA 2 (Dr. Banu Arun)
  • Hope Always (Lisa Lyons)

Lesson 6 – IBC Diagnosis (Dr. Wendy Woodward , moderate)

  • Scoring project update (Dr. Wendy Woodward)
  • Imaging, difficulties with tissue collection for diagnosis and research (Dr. Carisa Le-Petross)
  • Delays in diagnosis and how can advocates help (Kelly Gonzalez FNP-C)

Lesson 7 – IBC Treatment – the standard of care (Dr. Naoto Ueno)

Lesson 8 – Reconstruction and Unique IBC needs such as Lymphedema  (Dr. Mark V. Schaverien, Reema Doshi, Christine Allen [Q&A])

Lesson 9 – Patient Resources – Integrative (Complimentary) medicine (Dr. Wenli Liu), general well-being, sexual health (Dr. Andrea Milbourne)

Lesson 10 – Clinical trials (Dr. Bora Lim, moderate)

  • Introduction to clinical trials
  • Types of clinical trials
  • How do they work?
  • Who funds them?
  • Trial design considerations
  • Challenges for IBC-specific trials and how advocates can help
    (Dr. Angela Alexander, Dr. Bora Lim, Jie Willey, MSN)

Lesson 11 – Q&A and Discussion from recorded event and closing of part 1

Part 2 – Dr. Ueno (Moderator)

Lesson 12 – IBC Specialty Care – Who, What, When, How and Why?

  • What makes a specialist clinic (Dr. Naoto Ueno)
  • Why does specialization matter for IBC care? (Dr. Anthony Lucci)
  • How to speak to insurance company regarding access to non-network care (Joy Godby, and Dr. Amin Mirhodi)

Lesson 13 – State advocacy (Former State Senator Jennings, House Representative District #134 Sarah Davis)

Lesson 14 – How to self advocate with healthcare providers (Amber Potter, Advanced Practice Registered Nurse)

Lesson 15 – Research advocacy – e.g., DoD grant review panel, FDA open meetings, communication with the politicians, policymakers (Anne Meyn)

Lesson 16 – What is Advocacy (Terry Arnold)

Lesson 17 – Grants (Dr. Michael Stauder, moderator)

  • In general, how do grants work? Timelines relating to submission and receiving the money. (Janice Succi)
  • Review considerations – what are study sections and how are grants reviewed (general).(Dr. Bisrat Debeb)
  • Advocate participation on grants – what is needed e.g. how to work on biosketch, writing letters of support (Dr. Bisrat Debeb)
  • What do researchers need from advocates? (Dr. Bisrat Debeb)

Lesson 18 – Scientific literacy (Dr. Angela Alexander)

  • Reading articles/finding information.
  • Press releases vs peer-reviewed data (Example of Hahn controversy regarding convalescent plasma)
  • Journals vs social media examples of “headlines”
  • Basic statics – what is a p-valve

Lesson 19 – Media literacy and network-building  (Dr. Angela Alexander)

  • Effective use of social media – Do’s and Don’ts
  • How not to spread fake news or fake data
  • Relationship building (mention IBC Connect vision) (Dr. Swetha Bopparaju)

Lesson 20 – Fund raising (Daisy Chacon, moderator)

  • Why it is important? History of how fundraising led to the program? (Dr. Thomas Buchholz)
  • Where does the majority of research funds come from? (Dr. Naoto Ueno)
  • How to mobilize your personal network (Daisy Chacon)
  • What messaging works best? (Daisy Chacon)
  • Charities Galore – How do I choose? (Ginny Finn, Esq.)

Conclusion – Wrap up session: (Dr. Naoto Ueno and Terry Arnold)

  • Advocate needs, including program needs (IBC Connect)
  • Ideas
  • Future goals – international strength of mirrored messages
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FAQs

Is the course free?
Yes, the course is offered at no cost and with no obligation, however if you are able, we would like to encourage a suggested donation to MD Anderson’s Boot Walk.  You may directly donate on their website or if you wish, please donate to the IBC Network Foundation and we will forward on your behalf.

What if I can only attend part of the course live?
You are welcome to attend what you can, and watch the remainder online later.

Who is the course aimed at?
Anyone with an interest in IBC – whether as a result of personal diagnosis or not.  We have asked the speakers to make their talks understandable by a lay audience and questions are encouraged to ensure understanding.  Being an MD Anderson patient is not required.

Will I get a certificate of completion?
Yes, by registering for the course after completion, you will be mailed a certificate upon completion to the address you provided in the registration link.

After completing the course, am I required to do anything?
There are no obligations after completing the course.  We would of course love it if you found an aspect of advocacy that interests you and are inspired to work with us towards making things better.

How will you know if I finished the course?
Viewers will be offered a pre course and post course quiz to help reflect knowledge gained.

Register today!