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Tag: HAAwards

Louise Glover: 2016 Best in Show Youtube Winner

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.

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Barby Ingle Shares Her #1 Advice for Award Winning Advocacy Efforts

 Barby is the winner of the 2016 Lifetime Achievement award. She is a patient leader, motivational speaker, author, and President of the International Pain Foundation.  Learn why she does it and her greatest advice for other patients.

 

I advocate for all of us challenged with a chronic care condition involving chronic pain as well as their family, caregivers, healthcare professionals and public. Why do I do it, because an 8-second accident changed my life.
 
I was living my dream. I trained and performed cheerleading, dance, and gymnastics starting at age 4 through college. Straight out of college I started my own cheer/dance training company. A year later I was hired by Washington State University as the head spirit program coach.
 
I have been battling chronic pain since 1997. First with Endometriosis which resulted in a full hysterectomy and left oophorectomy. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), is a progressive neuro-autoimmune condition that affects multiple systems in the body and needs to be treated early so that disability does not take over and many secondary conditions. I lost my physical abilities and was bed bound for years. Using a wheelchair to get to get out of bed to go to doctor appointments.

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How The FDA Involves Patients and Advocates Replay

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:

FDA Patient Representative Program

FDA Patient Network Newsletter

Patient Focused Drug Development

Patient Engagement Advisory Committee 


screen-shot-2016-12-15-at-1-39-01-pmAndrea 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.

 

Sscreen-shot-2016-12-15-at-1-39-14-pmteve 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.

 

Strength in Words: Finding Your Blogspiration Replay

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!

 


screen-shot-2016-12-15-at-1-09-40-pmMissy 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.

Presenting the 2016 WEGO Health Activist Award Winners

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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!

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