SpeakinG Engagements

I am an established speaker with experience across a broad range of audiences from pharmaceutical teams, to physicians, researchers, congress, and other patient advocates. In addition to participating in a variety of speaking roles, I am also a member of the speaker's bureau for a cystic fibrosis non-profit CF Roundtable (USACFA) speaking at CF education and awareness meetings and to healthcare companies.

Past Speaking Engagements:

  • Phage Futures Congress 

  • Pharma and Patient Conference

  • FDA Rare Disease Day

  • Presidential Advisory Council on Combating Antibiotic Resistant Bacteria

  • CF Foundation ResearchCON co-chair and keynote

  • Milken Institute Future of Health Summit

  • Biotech Atelier 

  • Corbus and TranslateBio CF education and awareness meetings

  • Virginia CF Foundation Chapter Brewers Ball Keynote

  • Patient Rising podcast 

I am available for keynote presentations, panels, webinars, educational workshops, podcasts and more. 

A few topics I speak on:

  • The value of the patient voice in research 

  • Empowering patient communities to enhance clinical participation strategies

  • What must be done to better engage patients, enhance value, and build loyalty above-and-beyond the therapeutic relationship

  • The effects of antibiotic resistance on vulnerable patient populations

  • The need for development of novel antimicrobial therapies 

  • Avenues for rare disease advocacy 

  • Successful patient engagement within healthcare/biotech companies

  • Tools for strengthening patient/physician relationships

  • Navigating a career and balancing health with a disability

  • The hardships and triumphs of living with chronic illness and thriving in health uncertainty

 

​I am happy to craft custom presentations as well to suit a variety of audiences.

I am a published writer, having experience both in scientific and creative writing. I've authored journal publications, documented personal health perspectives, created informational health content and op-eds on clinical trial criteria and patient involvement in research. I author lay clinical trial summaries and investigational drug information summaries collaborating with pharmaceutical companies. I am a patient reviewer for the British Medical Journal and the Center for Informational and Study on Clinical Research Participation (CISCRP).

I have been a contributor for the past 3 years to CF News Today as a columnist with a blog titled "This Lung Life" sharing the complexities of life with a chronic illness - my creative outlet.  

I am available for:

  • Creating thought leadership pieces

  • Writing Op-eds

  • Journal collaborations

  • Lay clinical trial summaries and research summaries

  • Sharing personal health perspectives

  • Crafting guest posts and social media sponsorships

Writing

 
 

patient Engagement Advisor

My personal experience as a patient combined with my work in the advocacy field has allowed me to understand and develop successful methods of patient engagement. As an advisor, I'd love to help you find ways to compliantly incorporate the patient voice and feedback into your projects and foster meaningful patient connections. I have experience working with both for-profit and non-profit organizations, with a focus on fostering communication between biotechnology/pharmaceutical companies and their patient populations.

We can improve how to develop new products from discovery, through clinical development to commercialization, by listening to patients and understanding their passion to improve how they live with their disease, learning from that feedback, and turning it into actionable changes for better products and improved services.

 

I will always be a creative thinker, partner to brainstorm with, and sounding board for new initiatives. 

Previous Projects: 

  • Assist WEGO Health in patient recruitment outreach and Pharma Health Award nomination communications

  • Serve on Adult Advisory Council, Infection Research Initiative, and Protocol Review Committee with the CF Foundation providing guidance on the feasibility and uptake of clinical trial and research initiatives for the broader patient community

  • Co-developed a Patient Advisory Board with clinical teams for the Cystic Fibrosis Learning Network and the Cystic Fibrosis Lung Transplant Transition Learning and Leadership Collaborative as well as actively serving on the boards

  • Developed a white paper on fostering stakeholder collaboration to bring more accessibility of personalized medicine to patients with the Personalized Medicine Coalition 

  • Serving as an advisor to several healthcare companies including: Genentech, Felix Bio, and AstraZeneca

Consulting Services:

  • Developing strategic patient engagement and outreach strategies for both internal and external relations

  • Gathering and providing clinical trial protocol feedback 

  • Collecting and systematizing patient experiences

  • Establish and serve on advisory boards to capture patient perspectives

  • Building and maintaining strong relationships with patient networks, industry professionals, and advocacy organizations

  • Leading creation of patient-focused content

  • Crafting patient education materials to help with trial recruitment and retention

Social Media Design

I have experience connecting with other patient advocates through social media and can leverage its use to bring a call to action and awareness for campaigns, initiatives, and educational content. 

In my volunteer role as director for a non-profit cystic fibrosis organization, I manage Instagram content, create graphics on Canva, and publish blog content on WordPress and Wix. I have been a social media assistant at a conference, interviewing attendants, and posting highlight info snippets.

I am available for:

  •  Creating ​Infographics

  • Developing social media graphics and posts

  • Customizing brand design

  • Curating visually appealing and educational content