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Patients Rising University: Organizing Your Cancer Care

Jun 2

Join Patients Rising in Chicago

Sat, June 2, 2018
11:45 AM – 1:30 PM CDT
PianoForte Chicago
1335 S. Michigan Avenue
Chicago, IL 60605

Register Now

If you or a loved are dealing with a life threatening illness or chronic disease — and the information overload that comes with that —  this event is for you.

Patients Rising was formed to stand up for patients. To advocate for your rights. To help in the fight for your access to the medications you need and deserve. And to tell the truth about health care.

This event the first in a series of Patients Rising University workshops. We believe the best place to start is at the beginning. Before you can begin to truly manage all aspects of your care — you need to organize it. This event will cover the following:

  • Introduction to the newly-launched PRU learning platform, its goals, and its course offerings.
  • How to organize hard copy treatment logistics–including logging discussions with providers, questions to ask, tracking bills, managing insurance, and more–using the tools and information in the Patients Rising / Cancer 101 Planner.
  • How to organize your health records digitally–including logging discussions with providers, storing medical documents, tracking bills, managing insurance, financial planning for the long haul.
  • How to manage critical issues stemming from cancer treatment. Patients will learn to mitigate the financial distress from out-of-pocket costs and lost wages, plan for the realities of post-treatment sexuality and fertility issues, and evaluate the benefits and risks of clinical trials against their needs.
  • A series of survivors who have lived with a range of cancer types–including blood cancer, metastatic breast cancer, lung cancer, and prostate cancer–will share their personal experiences and offer advice for successfully navigating treatment

Moderator: Stacey Gualandi

Emmy-winning television/radio host, correspondent, and producer Stacey Gualandi has come a long way since her first big scoop right out of Miami University’s journalism program:  picking up horse manure as a P.A. on the set of the film Eight Men Out.   Not quite the journalistic scoop she was looking for, but it did lead to another “inside” job as Molly Ringwald’s stand-in on the film Fresh Horses, and a long career in Hollywood.

Stacey is currently the host/contributor for The Women’s Eye radio show and website; the contributing editor for Deluxe Version Magazine; and freelance reporter/producer for several outlets including E!,MTV UK,Inside Edition, Crime Watch Daily, Entertainment Tonight and EXTRA.   Stacey also recently worked as a General Assignment Reporter for Channel 13 Action News in Las Vegas and spent 9 years as a Senior Correspondent for the nationally syndicated newsmagazine Inside Editionwhere she tackled national, breaking and entertainment news.

Stacey is a certified yoga and spin instructor, voice actor and lives in Henderson with her husband Marty and mutt Bobo.

Featured Guests:

Dena Battle

President & Founder, KCCure

Dena Battle is the President for KCCure. She began her career in Washington, DC, as a congressional aide, and went on to work as a lobbyist for more than 10 years, working primarily on tax and healthcare policy. She serves on the Advisory Board for the Johns Hopkins Sidney Kimmel Cancer Center and as a member of the Patient and Family Advisory Council. She has testified before the FDA – Oncological Drug Advisory Board (ODAC) and helped co-author an NCI-ASCO-sponsored paper on improving end-of-life care for cancer patients.

In 2009, at the age of 40, Dena’s late husband Chris was diagnosed with metastatic kidney cancer. Together, they began a quest for the best care possible to combat the disease. Chris was treated at four different comprehensive cancer centers and participated in multiple clinical trials.

David Freedman

General Manager, Group Programs 

David is the General Manager of group programs at LegalZoom overseeing product, services and distribution in the commercial group, Medicare, life insurance and affinity markets. LegalZoom’s flagship group offiering, LifePlan is a comprehensive employee or group benefit that helps members confidently navigate the major and daily life events their families face including marriage, home purchase, childbirth, retirement and end of life planning through the right combination of legal and financial professionals and resources. With over 20 years of product development experience in the employee benefits, technology, legal, healthcare and actuarial industries, David focuses on making sophisticated services consumer-friendly.​​

Sarah Krüg

Executive Director, Cancer 101

Sarah initially joined CANCER101 as a board member in 2009 in a quest to help patients navigate their cancer journey. Driven by the passion to make an impact in patient care and engagement, Sarah has held a variety of roles within healthcare. She previously held the position of Global Education Director in the Medical Education Group at Pfizer, focused on establishing global health care improvement strategies and medical education standards worldwide. Prior to joining Pfizer in 2001, Sarah spearheaded the development of the Pediatric disease management clinical pathways and conducted clinical research at Memorial Sloan- Kettering Cancer Center. She is on the board of the Cancer Patient Education Network, where she also serves as Research Chair. She is also President of the Society for Participatory Medicine and on the board of the National Organization of Rare Diseases.

Clara Lambert

Oncology Financial Navigator

Clara Lambert is one of the founding Oncology Financial Navigators for the Cowell Family Cancer Center in Traverse City, Michigan.  She has been influential in the development of the role over the past four and one half years at her cancer center, having worked in insurance verification, financial counseling, and the revenue cycle prior to that.  She obtained her Bachelors of Business Administration: Integrated Professional Studies – Business/Health/Technology from Davenport University in 2015.

Clara is an active member of the ACCC (Association of Community Cancer Centers) Education Committee and is the current Chair of the ACCC Financial Advocacy Network (FAN) Advisory Committee, she has spoken at FAN meetings and is currently working with the Advisory Committee to revise and enhance education for financial advocacy. She has also contributed to the ACCC FAN Blog.  Clara has completed the Oncology Patient Navigation training through the George Washington Cancer Institute, has received her OPN-CG (Oncology Patient Navigator – Certified Generalist) certification from AONN+(Academy of Oncology Nurse & Patient Navigators)  and she is a Certified Application Counselor (CAC) for the ACA healthcare marketplace and MiBridges programs.  Clara feels it is very important to stay on top of healthcare policy & healthcare changes that are continuously taking place.

Financial Toxicity is an important topic to Clara, as her family has been touched by cancer.  She has been able to use that experience, along with her background in healthcare to connect with the patients and caregivers to streamline the financial navigation process for everyone.

Alyse Poteshman

Patient

When Alyse Poteshman was thirty-six she was diagnosed with a rare disease – eosinophilic gastroenteritis – a chronic, flaring condition where the intestines seize and do not absorb nutrients. At thirty-eight some abnormal blood tests led her to have bone marrow testing for cancer, but she got the all-clear. Then, when she was fifty-two she was found to have precancerous hyperplasia in all four of her parathyroid glands. Their removal left her with another rare disease, hypoparathyroidism, where the body cannot maintain sufficient blood calcium. Alyse couldn’t be a spectator in her health any longer. She took a more active role in getting testing and meeting with specialists. This led her to a diagnosis of Multiple Endocrine Neoplasia Type 2A (MEN2A). A year later she was diagnosed with Chronic Lymphocytic Leukemia (CLL). She is on top of her regular checkups and has learned how to succeed in a complex healthcare system.

Alyse has been through a lot but it hasn’t stopped her from getting two Master’s degrees (one in learning disabilities and one in educational administration) and having a robust career in education. She’s fifty-seven now, has three daughters, one grandson, and after all she’s been through, tells people she is learning how to live with “Alyse 2.0”.

Alyse is living proof that you have to fight to get what you need in healthcare. Oh, and that it helps to know how to bake since the people who schedule her doctor’s appointment like fresh baked-goods.


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