My diagnosis of epilepsy was a shock. I didn’t understand how I could have such a condition and insisted that my doctors and neurologists were wrong. I’d only ever saw seizures on television and across social media of tonic-clonic seizures – was that really me? Having just turned 18, a life changing condition was not what I had in mind. Over time I realized that ignoring my epilepsy was not the answer and I slowly began to accept it. 3 years after my diagnosis, I was becoming really frustrated with those around me that didn’t understand. I was being bullied, discriminated and felt as though it was me against the world. I chose to create a video about my epilepsy, showing viewers the problems I faced but in a lighthearted way. Just because I have epilepsy doesn’t me it defines me – I’m still a person! 2 years later, louiseglover3 at Upon A Sunshine is still online and I continue to connect with new epilepsy warriors every single day.
As a patient leader, you’re always looking for new opportunities to get your voice heard, right?
Then don’t miss FDA representatives Steve and Andrea give an overview of patient leader opportunities offered by the Office of Health and Constituent Affairs!
FDA: How We Involve Patients and Advocates
Join FDA representatives Steve Morin & Andrea Furia-Helms as they provide an overview of FDA’s Office of Health and Constituent Affairs, patient engagement milestones and programs, and opportunities for how patient advocates can get involved in FDA activities.
Learn how to stay up to date with the latest updates and opportunities within FDA Patient Network
Review the opportunities within the FDA Patient Representative Program and how you can become one of the 200 Patient Representatives
Learn how to participate in FDA Sponsored Public Meetings in person or online
Interested in exploring more of the topics discussed in this webinar? Check out the links below for more information:
Andrea Furia-Helms joined the FDA’s Office of Health and Constituent Affairs in May 2007 to manage the FDA Patient Representative Program through recruitment and education of patients and primary caregivers who represent varying disease and conditions and prepare them to serve in FDA meetings such as Advisory Committees and product review division meetings. She works across the medical product Centers to ensure patient perspectives are included in the medical product development and review process.
Prior to FDA she was Director of the Back to Sleep Campaign, a public-private partnership to educate communities on Sudden Infant Death Syndrome (SIDS), at the National Institutes of Health, National Institute of Child Health and Human Development, where she developed outreach initiatives for African American, American Indian and Latino communities. Ms. Furia-Helms has a B.A. in psychology from Framingham State University, a B.S. degree in community health education from University of Maryland, and a Master of Public Health from The George Washington University.
Steve L Morin R.N., B.S.N.
CDR United States Public Health Service
Commander (CDR) Steve L. Morin received a Bachelor of Science in Nursing from the University of Southern Maine in December 1997. Following his graduation, CDR Morin worked as a staff oncology nurse at Maine Medical Center and the National Institutes of Health (NIH) and a research nurse for the National Cancer Institute.
CDR Morin joined the FDA in 2009 and worked in the Office of Surveillance and Epidemiology where he performed Medication Guide and Patient Package Insert reviews for the Patient Labeling & Education Team. Since 2011 he has been in the Office of Health and Constituent Affairs where he works closely with numerous Patients and Patient Advocate Groups in helping them understand the regulatory process, medical product approval process, expanded access, and other topics important to patients. He also assists with the Patient Representative Program, handling telephone and email communications from patients and the public. CDR Morin currently manages the FDA Patient Network that includes the For Patient website, FDA Patient Network Newsletter, @FDA_Patient_Net twitter account.
Missed part of our #HAAwards celebration? Don’t worry, check out Missy Voronyak’s webinar below as she offers creative and refreshing ways to approach your next blog post!
Strength in Words: Finding your Blogspiration
Have you lost that blogging feeling? Join veteran blogger and social media pro Missy Voronyak for this webinar to reignite your passion for blogging! She’ll share inspiring stories of health advocacy bloggers making a difference and give you fresh, creative ways to approach your blog content to help you get un-stuck and back to inspiring others. You can find your own copy of Missy’s slides here.
What You Missed:
- Find your own inspiration by focusing on the latest trends or topics within your community. You can always use your own experiences, positive or negative, to create new content as well.
- However, when you’re feeling stuck, Missy offers 10 fresh and creative ways to generate new content. From How-To Posts to Email Interviews, Missy has you covered to get your blogspiration back on track!
- Missy offers some quick tips as well! As a health advocate, it’s important to include both medical and sponsorship disclosures when necessary to avoid any future conflicts.
- Missy challenges you to take 10 minutes to come up with a list of topics of your choice and find a place to store them, whether it’s on Evernote or a journal, that way you can turn to these ideas anytime you need some blogspiration!
We can’t wait to see what you come up with!
Missy Voronyak (@MissyVoronyak) is a Group Director of Social Media and Influencer Engagement with WCG, an integrative communications agency. She is also an established blogger at marketingmama.com where she writes about food allergies, parenting and family activities. Missy is an advisor for the Social Media Breakfast of Minneapolis/St. Paul, the founder of the MN Blogger Conference (est. 2010) and serves on the board of directors for the Food Allergy Support Group of Minnesota.
Congratulations to the 2016 WEGO Health Activist Award winners! These passionate and motivated individuals are certainly creating change in the healthcare landscape!
A huge thank you to everyone who participated in our #HAAwards celebration this week. The WEGO Health team had a blast ‘hanging out’ with you all week. We are so grateful to be part of all of your advocacy journeys and we could not ask for a more dedicated and passionate community!
Our Twitter Chats this week were an absolute blast. We had so many community members offering tips, tricks and tactics that it was almost a challenge to keep up! Don’t worry, we’ll be compiling a document of all the advice we received. We’ll send it out to our network once it’s done!
For those of you who missed out on any of the webinars, we will be posting all of the recording on our blog. Be sure to check back in.
And of course, be sure to fill out your WEGO Health Profile so we can find the best opportunities for you and your community!
And now, we’d like to present our 2016 WEGO Health Activist Award Winners!
Best in Show Community: Ronny Allan
Advocating for Another: Tory Aquino
Lifetime Achievement: Barby Ingle
Best in Show: Twitter: Tiffany Kairos
Hilarious Health Activist: The Frey Life
Rookie of the Year: Amanda Siebe
Health Activist Hero: Jessica Gimeno
Best in Show: Youtube: Louise Glover
Best Kept Secret: Lisa Cypers Kamen
Best in Show: Instagram: Renee Eastwood
Best in Show: Facebook: Aaron Blocker
Best in Show: Pinterest: Sara Ringer
Best Team Performance: International Pain Foundation
Best in Show: Blog: Bob DeMarco
Congratulations to all of the nominees, finalists and winners! Together, we can create the change we wish to see in healthcare!