We The Patients

Speakers, Panelists, Patient Advocates, and Guests

Mariannette Miller-Meeks

Networking Lunch Keynote 
June 11 @ 12:10 pm

Mariannette’s father was a Master Sergeant in the United States Air Force who was forced to take up extra work, sometimes two or three jobs, to support their family. Her mother, who did not have a high school education, also worked multiple jobs.

Mariannette originally dreamed of becoming a teacher because she loved school and wanted to share her passion for learning with others. However, in 10th grade, she was severely burned in a kitchen fire. While at the hospital, Mariannette was treated by a physical therapist who went out of her way to make sure she got better. This woman’s kindness and selflessness inspired her to become a doctor so she could help others.

Mariannette was the fourth of eight children and since her parents did not have the means to pay for college, she left home at 16 and enrolled in community college. She later enlisted in the United States Army at 18, where she served for 24 years as a private, nurse, and doctor (ophthalmologist or eye diseases/surgery.) She went into private practice in Ottumwa in 1997 and she has remained there with her husband, Curt.

Mariannette has two grown children, Jonathon and Taylor. In 2010, Governor Terry Branstad appointed her as the Director of the Iowa Department of Public Health where she served until 2014.

In 2018, the voters of Senate District 41 elected Mariannette to fight for them in the Iowa State Senate. She resigned from the state senate on January 2, 2021 to take her seat in the United States House of Representatives.

Mariannette is a member the House Committee on Energy and Commerce, where she sits on the Subcommittee on Health and the Subcommittee on Environment, Manufacturing, and Critical Minerals, as well as the House Committee on Veterans’ Affairs, where she serves as Chairwoman of the Subcommittee on Health.

 

Brian Blase, Ph.D.

Paragon Health Institute

Transorming Healthcare: The Access Act and Its Vision for HSAs – Panelist
June 11 @ 10:15 am

Brian Blase, Ph.D., is the President of Paragon Health Institute. Brian was Special Assistant to the President for Economic Policy at the White House’s National Economic Council (NEC) from 2017-2019, where he coordinated the development and execution of numerous health policies and advised the President, NEC director, and senior officials. After leaving the White House, Brian founded Blase Policy Strategies and serves as its CEO.

A. Mark Fendrick, MD

University of Michigan

Transorming Healthcare: The Access Act and Its Vision for HSAs – Panelist
June 11 @ 10:15 am

A. Mark Fendrick, M.D. is a Professor of Internal Medicine in the School of Medicine and a Professor of Health Management and Policy in the School of Public Health at the University of Michigan. Dr. Fendrick received a bachelor’s degree in economics and chemistry from the University of Pennsylvania and his medical degree from Harvard Medical School. He completed his residency in internal medicine at the University of Pennsylvania where he was a fellow in the Robert Wood Johnson Foundation Clinical Scholars Program.

Jessica Baladad

Patient

Transforming Healthcare: The Access Act and Its Vision for HSAs – Patient
June 11 @ 10:15 am

Jessica Baladad is a 5-year cancer survivor who became a passionate advocate after a practitioner dismissed a malignant lump in her breast during a clinical exam.

Thankfully, Jessica learned how to do a self breast exam after having a benign tumor removed while she was in college, and it was a routine she maintained throughout adulthood. Two weeks after her clinical appointment, Jessica was doing a self exam in the shower when she found a lump, the same lump her practitioner failed to tell her about and documented as “normal.”

Jessica was later diagnosed with Stage 2B invasive ductal carcinoma. She underwent 16 rounds of chemotherapy, a double mastectomy, 24 rounds of radiation, a hysterectomy and a 10-hour flap reconstruction.

She started Feel For Your Life as a social media outreach project to encourage women to be their breast health advocates, and in 2021, Jessica became the first breast cancer survivor to create an app that provides resources for doing self breast exams and getting screened, allows users to track and monitor their changes, and lets users set reminders for doing self exams.

Since launching the app, she’s helped write legislation in the State of Tennessee to promote risk-reducing measures against cancer and disease. Billed as the Feel For Your Life Act, it requires high school students to learn about self breast exams, testicular exams and skin exams. Additionally, Jessica has spoken before members of congress in to eliminate PBMs, QALY scores and co-pay accumulators. These efforts will help ensure patients get better access to healthcare without the bureaucracy of insurance companies.

When Jessica isn’t advocating, she enjoys traveling and exploring new places, attending sporting events with her husband and photographing animals.

Darlene Shelton

Danny’s Dose

Unmasking Healthcare Gatekeepers: Benefit Managers & Access to Care – Panelist
June 11 @ 11:15 am

Darlene Shelton and her family created the Danny’s Dose Alliance in 2015 after attempts to assure proper emergency treatment for her grandchildren with hemophilia revealed a gap in proper care for all types of “Special Medical Needs”. In working with state EMS she realized the issue appears to be conflicting protocols, fear of liability and lack of education. This knowledge helped form the organization’s 3 Main Goals: 1. Raise awareness and partner with EMS to see changes made nationwide, 2. Lead in the creation of disease specific Treatment Guidelines and EMS Education, 3. Educate families in proper Emergency Preparedness.

Daniel B. Frier, Esq

Frier Levitt

Unmasking Healthcare Gatekeepers: Benefit Managers & Access to Care – Panelist
June 11 @ 11:15 am

Daniel B. Frier, Esq. co-founded Frier Levitt in 2000, and serves as the Chair of the firm’s Healthcare Group. With nearly 30 years of experience, he has built a strong reputation for his knowledge representing healthcare organizations in transactional, regulatory and corporate matters. His diverse client base includes large medical practices, individual physicians, clinically integrated networks, private equity investors, ambulatory care facilities, management services organizations (MSOs), physician-owned pharmacies and dispensaries, managed care organizations, non-profit healthcare organizations, healthcare technology companies, hospitals, hospital medical staffs and laboratories.

Tommy Lucas

 

Unmasking Healthcare Gatekeepers: Benefit Managers & Access to Care – Panelist
June 11 @ 11:15 am

Dr. Tommy Lucas is the president of VIEW Optometry, a multi-location optometry practice serving patients throughout Central Texas. He has worked to improve patient access to eye care at the state and federal level for over 18 years as the director of advocacy for the Texas Optometric Association.

Monique Flores

 

Unmasking Healthcare Gatekeepers: Benefit Managers & Access to Care – Panelist
June 11 @ 11:15 am

As a proud product of a Navy family and The Lonestar State, Monique Flores has dedicated the last twenty years to supporting her community through Real Estate.  She has founded her own boutique brokerage and evolved into a respected entrepreneur within her local area. Her success underscores the idea that hard work and drive, are strengths to be celebrated. Through her brokerage, Monique continues to foster a supportive environment where her team and clients alike can create their own imprint on the community. 

Thomas Johnson

ASAP 340B

One on One Spotlight: Empowering Health Equity: The Intersecion of 340B and Charity Care – Guest
June 11 @ 1:15 pm

Thomas Johnson is the Executive Director of ASAP 340B. A native of Washington, DC, he brings 30 years of professional experience in the health care, nonprofit and association management space. ​

Mr. Johnson served for nine years as President and CEO of Medicaid Health Plans of America (“MHPA”), a trade association representing health plans in the Medicaid business. In his role at MHPA, he led advocacy efforts involving the Affordable Care Act, as well as other policy issues affecting the Medicaid managed care industry. Mr. Johnson was President and CEO of the DC Hospital Association. Mr. Johnson also served as the Vice President of Compliance and External Affairs with DC Chartered Health Plan, a Medicaid health plan in Washington, DC, and as Senior Advisor to the Gorman Health Group, a consulting firm focused on assisting government-sponsored health plans. Mr. Johnson was also a staff Director with the Greater Washington Board of Trade, and legislative director with the Medical Society of the District of Columbia.

Mr. Johnson has also served on a number of boards and commissions. He is currently the Chair of the Board of the Sickle Cell Disease Association of America. Other boards he has served on include the DC Prisoners Legal Services Project, the Arts and Humanities Council of Montgomery County, and the DC Association of Health Maintenance Organizations.

Dorothea Lantz

Prader-Willis Syndrome Association

Orphan Cures Act: Why it Matters for Rare Disease Patients – Moderator
June 11 @ 1:45 pm

Empowering Change: Patient Voices of Value
June 11 @ 3:00 pm

Dorothea Lantz is the Director of Community Engagement for PWSA | USA, a licensed Real Estate Broker with ONE Sotheby’s International Realty, and a lifelong resident of South Miami, Florida. Her most cherished role, however, is being the mother of an extraordinary 6-year-old boy Hunter, who is living with Prader-Willi Syndrome and Autism Spectrum Disorder. Following the birth of her son in 2017, Dorothea immersed herself in volunteer work for PWSA | USA and in May 2021, she joined the organization as Director of Community Engagement. Over the past three years, Dorothea has increased the membership of PWSA’s Advocacy Committee over 5000% and established a grassroots advocacy and awareness program to engage, educate, and activate members of the PWS community. Dorothea has fostered expanded relationships with biotech in the rare disease space and continues to expand her advocacy work by addressing audiences at events and conferences throughout the country, championing hope and collaboration across all rare diseases.

Paul T. Kim

Kendall Square Policy Strategies

Orphan Cures Act: Why it Matters for Rare Disease Patients – Panelist
June 11 @ 1:45 pm

With 30+ years of experience in Washington DC, Paul Kim advises patient advocates, global life science leaders, and innovative emerging companies on FDA and public health policy- developing legislative and policy strategies for regulatory reforms, drafting and enacting Federal legislation, and securing funding or creating effective P3s.

Paul’s experience extends across drug and device law; rare disease innovation; public health and immunization policy; biodefense policy; and congressional oversight & investigations. Paul has represented leading biotechnology, pharmaceutical and medical device companies, trade associations, and patient advocacy groups before the US Food and Drug Administration (FDA), the Centers for Medicare and Medicaid Services (CMS), HHS ASPR/BARDA, and Congress.

Kim Czubaruk

CancerCare

Orphan Cures Act: Why it Matters for Rare Disease Patients – Panelist
June 11 @ 1:45 pm

Kim Czubaruk is an attorney with expertise in health policy and advocacy that improves care, coverage, and patient outcomes. Her background in civil litigation and disability law informs her public policy analysis, written comments, and solution driven projects.

Demi Montgomery

Jacob’s Hugs Registry and The Waiting Room Entertainment 

Empowering Change: Patient Voices of Value – Moderator
June 11 @ 3:00 pm

Demi Montgomery is a speaker for systematic sclerosis and the rare disease community. She’s also a Lead Facilitator of the National Scleroderma Foundation BIPOC Support Group, FLOC Executive Board Member as well as the driving force behind State Bill 133. Demi resides in Dayton, Ohio where she is a wife, mother, and community volunteer.

Demi is also the CEO of Jacob’s Hugs Registry and The Waiting Room Entertainment. She’s a speaker/collaborator/moderator for Patients Rising, Brain Injury ASBISG organization and the National Organization for Rare Disorders with a feature film on the Disorder Channel “Amy & Demi’s Scleroderma Journey”. She is an alumnus of University of Phoenix with an AA in Human Service Management and trained in Mental Health First Aid. She is also the recipient of the National Scleroderma Foundation 2020 Advocate of the Year Award and 2022 Program of the Year award for BIPOC (Black, Indigenous, People of Color)

Caryl Harris

Avery’s Hope

Empowering Change: Patient Voices of Value – Panelist
June 11 @ 3:00 pm

Caryl Harris co-founded Avery’s Hope with her husband Eric. Named for their beautiful, and beautifully rare, grandson. Caryl is a member of the National Organization for Rare Disorders and is a representative for Avery’s Hope with the EveryLife Foundation for Rare Diseases, and the Global Genes Rare Patient Alliance. She serves on the Patient Senate for Patients Rising Now. Caryl is also a Founding Member of WRAP – Worldwide Rare Advocacy Partnership. Caryl is an avid cyclist, an artist, a wife, a mom to three amazing young men, and “Ya Ya” to 4 grandsons.

Michael Riotto

Patient Advocate, National Myeloma Coach

Empowering Change: Patient Voices of Value – Panelist
June 11 @ 3:00 pm

Michael Riotto was diagnosed with multiple myeloma in 2011, which has resulted in a journey through the maze of chemotherapy, radiation, surgeries, broken bones, stem cell transplant, and more. Following retirement, he found his passion for patient advocacy and now travels the country telling his story to organizations, government officials, support groups, and others in order to advocate for change and make a difference. He is an avid health and fitness enthusiast who truly believes in living life every day to the fullest.  

Frank Rivera

Patient Advocate

Empowering Change: Patient Voices of Value – Panelist
June 11 @ 3:00 pm

As the president of Stronger Than Sarcoidosis, a nonprofit organization created by sarcoidosis patients for sarcoidosis patients, I promote awareness and education about this rare and often misdiagnosed disease. I have been living with sarcoidosis and Parkinson’s for over a decade, and I use my personal experience and passion to empower and support others who face similar challenges.

I also founded and lead Sarcoidosis of Long Island and RareNY, two local initiatives that aim to raise awareness and funds for sarcoidosis and other rare diseases in New York. I have been a vocal and effective advocate for sarcoidosis at the local, state, and federal levels, speaking at congressional briefings, organizing events, and collaborating with other stakeholders in the rare disease community. I have developed strong skills in fundraising, government advocacy, and community building, and I am committed to making a positive difference for people living with rare diseases.