7
Dec

Live From the Red Carpet of the #HAAwards Day 3

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Listen to Shane as he talks to the finalists for Best in Show: Facebook and Best in Show: Community!

 

 


profile-picture-with-micShane Schulz is the Creator and Host of the Arisen Strength Motivational Podcast and the Founder of the Speaking to the Heart Radio Network. Using his experiences and strengths to help others who are more like him than different be More than the challenges they face!

6
Dec

Chronic Illness Advocacy and the Holidays

chronicchristmas-coverAdvocating for chronic illness is a year-round job, one we do with passion and dedication. But advocacy can get more challenging during the holidays. It’s a busy and sometimes emotional time of year and there’s only so much energy to go around.

My new book Chronic Christmas: Surviving the Holidays with a Chronic Illness is an Advent calendar of tips to help you savor the season. When writing it, I wanted to not just deal with things you can do yourself to enjoy the holidays, but something more, as well.

So much of living well with chronic illness has to do with the reactions and support we get from others. That’s why I included a section in each chapter for friends and family who want to help, but may not be quite sure how to do that. In these, I shared information about the reality of living with chronic illness to explain why certain types of help may be a better choice than others. It is my hope that reading Chronic Christmas will help your loved ones have a better understanding of life with chronic illness and in so doing, be better able to contribute to your quality of life.

Navigating this season with a chronic illness and the desire to create change is a physical and emotional challenge. Other than thrusting my book at all and sundry (joking… maybe), what can you do to advocate for yourself and others this holiday season? Here are a few suggestions.

Dealing with difficult people

We all know them. That person who makes a beeline for us at social events, ready to share esoteric techniques bound to cure our chronic illness. This type of diet, that type of home remedy, and their hairdresser saw something on the Internet about leeches. You could roll your eyes and walk away, but you could also seize the moment and give solid information about your illness and its appropriate treatment. Don’t wait to get cornered — this type of situation can feel emotionally fraught when you’re dressed for a party and there to have fun. Preparing what to say before going out helps you click into health activist mode when needed.

A baking brigade

Have you ever heard of a cookie exchange? This can be a wonderful time and energy saver. You collect a group of people, each of whom makes half a dozen or a dozen cookies. Then you get together, share the treats, and everyone goes home with a variety. Being part of a cookie exchange is also a great way to share information about the impact of trigger foods. Find out which kinds of sensitivities and allergies are present in the participants and their families. When the instructions go out, make sure you include information about the consequences of eating such foods, as well as ways for food be safe.

Say hello

Living with a chronic illness can be a very isolating experience. Pain and fatigue makes you turn inward and block out the world around you. One of the suggestions in my book is to deliberately engage with the world around you. Turn off the music, put the phone in your pocket, and look up. And then start talking to the people you meet. The barista at the coffee shop, the homeless guy on the corner, the person next to you on the train. Smalltalk can lead to deeper conversations where it may be natural to talk about chronic illness.

Chronic illness advocacy can take a variety of forms, from big to small. You may not have the energy or to testify to Congress, but there are opportunities in your everyday life to educate and advocate. Often, those small moments have ripple effects. You talk to one person, they talk to their friends, and the message moves.

For the days when you are feeling exhausted and wish you could do more, remember this one thing: when you create change in your life, you change the world.


lene-andersen-2Lene’s new book is Chronic Christmas: Surviving the Holidays with a Chronic Illness. She’s also the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, 7 Facets: A Meditation on Pain, and the award-winning blog The Seated View.

 

 

6
Dec

Live From the Red Carpet-Day 2 of the #HAAwards!

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Listen to Day 2 of the #HAAwards podcast as Shane talks with our finalists for Best in Show: Community & Blog!

Be sure to listen to all of Shane’s podcasts here!


profile-picture-with-micShane Schulz is the Creator and Host of the Arisen Strength Motivational Podcast and the Founder of the Speaking to the Heart Radio Network. Using his experiences and strengths to help others who are more like him than different be More than the challenges they face!

5
Dec

Live From The Red Carpet!

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Join us live from the 5th WEGO Health Activist Awards red carpet!

 

Shane Schulz, the creator and host of the Arisen Strength Motivational Podcast and the founder of the Speaking to the Heart Radio Network will be interviewing our 2016 WEGO Health Activist Awards finalists all week long!

Each day Shane will be releasing an interview with the finalists for the award categories being announced that night.

These finalists are true leaders of their community and utilizing the online platform to get their voice heard! Be sure to tune in all week!

Check out the Day 1 #HAAwards Podcast now and be sure to go and listen to Shane’s other podcasts as well.

 


profile-picture-with-micShane Schulz is the Creator and Host of the Arisen Strength Motivational Podcast and the Founder of the Speaking to the Heart Radio Network. Using his experiences and strengths to help others who are more like him than different be More than the challenges they face!

29
Nov

WEGO Health November Community Update

The last few months have been busy, busy, busy in the patient advocacy world! Conferences, summits, meetings, twitter chats, blog weeks, #HAWMC, awareness campaigns – you name it, it probably happened. Here at WEGO Health, we love getting involved with these activities.

Here at WEGO Health, we love getting involved with these activities.

Jack Barrette, David Goldsmith and Andrew Hopper had the privilege of connecting with patient leaders at Health 2.0. Want to watch the video? Check it out here.

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WEGO Health CEO Jack with our awesome patient leaders at ScriptMed in Miami, FL October 2016

Laurel Netolicky represented the patient voice by presenting findings to a telemedicine survey (that many of you took!) at the American Telemedicine Association Conference. Thanks Nathaniel for snapping a picture of Laurel on stage!

Kristen Hartman Bennett and I met up with Multiple Sclerosis patient leaders at a summit hosted by one of our sponsors in Boston, MA. We had a blast spending time with these leaders.

Caitlyn D’Agati worked with Epilepsy patient leaders to record patient testimonial videos for one of our sponsors. Watch them on our sharing hub.

Jack presented a panel with 3 top leaders at the ScriptMed conference in Miami, FL. In fact, the conference organizer said it was the best panel the conference has ever had!

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Julie with Patient Leaders at Stanford MedX in Palo Alto, CA September 2016

And I had the opportunity to meet up with many patient leaders between Stanford Medicine X in Palo Alto, CA and NYC, at a patient advocacy training sponsored by National Center For Health Research in DC and at the American College of Rheumatology annual meeting.

A huge THANK YOU to all the leaders who have been working with Jackie Zimmerman on recruiting efforts. Truvios, conferences, community insight groups – there have been many different opportunities she’s been recruiting. Epilepsy, Bi-Polar Depression, Acromegaly, Multiple Sclerosis, Rheumatoid Arthritis, Hemophilia A & B, and Liver and Kidney Transplants are just a few of the condition areas we’ve worked with since August.

But, the last few months, a HUGE focus of ours has been on the WEGO Health Health Activists Awards. October brought the wrap up of our endorsements phase and Kristen Long and I began meeting with our judges. On each of our judging calls, Kristen and I reiterated what a tough job they had. Each and every nomination that came in had both of us saying “wow”. It truly is amazing what our community members are doing.

As we wrap up 2016, we’ll be calling on Patient leaders in the Atopic Dermatitis, Psoriatic Disease, Chronic Myeloid Leukemia, Duchenne Muscular Dystrophy, Gout and a few other condition areas as well. Want to get involved with these projects? Make sure to reach out to us: community (at) wegohealth.com.

But if you only take one thing from this newsletter, let it be this: sign up to support our Thunderclap campaign and come out to celebrate the patient voice December 5-9th, 2016. Make sure to learn more about the schedule of events here. Mark your calendars and don’t miss out!

Remember to keep us up to date on your adventures – we’d love to support you in any way that we can.

It’s been a wonderful 2016 in the great, wide world of patient advocacy. I can’t wait to see what 2017 brings!


Julie Cerrone WEGO Health Headshot

 

Julie Cerrone is the Patient Influencer Network Director at WEGO Health. Working with WEGO Health as a Patient Influencer prior to joining the WEGO Health team, Julie wakes up every day motivated to help raise the patient voice. Follow Julie on Twitter, Facebook and on her personal blog.

 

23
Nov

#HAAwards Celebration Schedule Of Events

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Are you getting excited for the #HAAwards celebration?! Because we sure are!

Our Patient Leader network is straight up awesome.

Whether you’re cracking someone up, offering inspiration to keep fighting or offering support – you all have made an impact on another’s life. You all are creating change. And you all deserve to be celebrated!

Which is why we are bringing you a week jam packed with webinars, Twitter Chats, giveaways, podcasts and more December 5th-9th, 2016.

First things first, no you do not have to buy a ticket to Boston! (It’s snowing here, believe us you wouldn’t want too!) Our entire celebration is virtual, so you can join in anywhere around the globe.

Now, let’s get down to business:

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Kick-off! 

 Have you signed up for our Thunderclap  campaign? 9am EST on December 5th, all of our   Thunderclap supporters will shout from the      rooftops that our Awards celebration is kicking    off! If you haven’t added your support yet, do it  today!

 WEGO Health will be kicking off the celebration  with a Facebook Live video on Monday morning  at 10am EST. Be sure to join us to add where  your from and what you community you  advocate for. We love to give shoutouts to our  community members.

 Each day of the week, we will be focusing on a  different theme within the advocacy community.   To provide you with as many tips and tricks to  improve your advocacy. Throughout the day, we  will be sharing numerous resources, on our  social channels, that align with this theme. And  don’t miss the podcast interviews we’ll be  sharing on our feeds. Shane Shultz,  from  Speaking to the Heart Radio Network, has  graciously interviewed our finalists on his podcast. Each day we’ll be releasing these podcast episodes, so keep a close eye on our feeds for them!

 

laptop-clip-art-at-vector-clip-art-imageImprove Your Advocacy Efforts With Industry Experts

You’ll also have the opportunity to watch a number of webinars, all illustrating ways to improve your advocacy efforts. We are happy to announce we have a variety of hosts within the industry, including marketing gurus and even representatives from the FDA. You must register for these webinars and space is limited! 

Day of the Week

Time (EST)

Host

Webinar Topic

Registration Link

Monday 12/5 3pm Missy Voronyak

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.

Register Here
Tuesday 12/6 3pm WEGO Julie & WEGO Kristen

Who is WEGO Health?

Learn our mission and all about the opportunities we have at WEGO Health for you.

Register Here
Wednesday 12/7 11am Marie Ennis-O’Connor

How to Rock Social Media

Do you want to grow your social media following? Are you looking to make an impact online? Then this webinar is for you.  In it you will learn platform power tips for Facebook, Google+, Twitter, LinkedIn, Pinterest, and Instagram including how to:
• Create and curate compelling content others will want to share
• Build better engagement with your followers
• Develop content and social media calendars
• Perfect your social media profiles
• Use scheduling tools to save time
• Design great graphics

Register Here
Thursday 12/8 3pm Andrea Furia-Helms & Steve Morin

How We Involve Patients and Advocates

This presentation will 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.

Register Here
Friday 12/9 11am WEGO David

Experts Demo

Don’t miss out on a demo of our new patient leader program, Experts.

Register Here

 

Join our Twitter Chat to Share Your Best Advice

imagesWe also invite you to join our daily Twitter Chats! Each chat will focus on that day’s theme and will feature the finalists of the award categories being announced that evening.  We encourage everyone to join the TwitterChat discuss and share their thoughts. Twitter Chats will be held daily at 1pm EST.  Jump on over to Twitter and use #HAChat.

 

Day of the Week

Time (EST)

#HAChat Topic

Monday 12/5 1pm Come join the finalists for Best in Show Twitter, Best in Show Instagram and Best in Show Youtube for a discussion surrounding different medium contents. Images, videos, written content – there are numerous ways to get your story out there. What’s the best one and what are tips to make them effective? Jump in and learn how to better utilize these platforms!
Tuesday 12/6 1pm Who better to help us lead a discussion on building community and engagement than the finalists for Best in Show Blog and Best in Show Community? What are go to strategies for engaging with your networks, what apps or tools can be utilized and what challenges are there when building online community? Join the discussion and take away advice for building a community and fostering engagement.
Wednesday 12/7 1pm What kind of content do you publish on your social channels? How do you decide what to post? How do you get around the Facebook algorithm? During this chat, we’ll be joined by the finalists from Best in Show Facebook and Best in Show Pinterest. In the end, let’s all improve our content engagement and show up more in people’s feeds!
Thursday 12/8 1pm Why did you start your online patient advocacy journey? We each have different angles and why’s behind what we started, but there is so much we can learn from each other’s journeys. Joined by Best Kept Secret, Hilarious Health Activists, and Advocating For Another finalists, we’ll be discussing the why’s behind your advocacy!
Friday 12/9 1pm Raise your hand if you believe sharing your story is important! We can definitely agree that sharing your patient/caregiver experience is exponentially helping others around the world. In this #HAchat, we’ll be joined by finalists in the Lifetime Achievement, Health Activists Hero, Best Team Performance, and Rookie Of The Year awards categories to discuss storytelling and patient advocacy.

 

Win Prizes!

present-clipart-2With so much going on, we want to give you credit for participating! The more you engage, the more chances you have to win prizes. And who doesn’t like free stuff?

We will be hosting a giveaway each day, with 2 big giveaways on Friday.

There are 4 ways to enter win:

  1. Fill out your public profile. In order to participate in awesome WEGO Health opportunities, we need to make sure we have your correct information. Complete a new profile, or update an existing profile, and we’ll give you TWO extra entries into the giveaway bucket! Click here to create or update your WEGO Health profile.
  2. Answer our discussion questions. Each day we will be blasting out a Discussion Question on our Instagram and Facebook feeds. These discussion questions will explore patient advocacy (we promise they’ll be fun!). Questions will be released daily at 7:30am and 12pm EST.  To be entered to win that day’s giveaway, you must submit your answers by 5pm EST.  Answers submitted after 5pm will be entered to win the big giveaways on Friday but will not be entered for that day’s prize.
  3. Attend a webinar. Yeah, this one is pretty awesome. Attend a webinar, learn tons of cool tricks and you’re automatically entered to win a prize. Winning!
  4. Attend a Twitter Chat. Another awesome way to win. Participate in the discussion during your lunch break and you’ll be entered to  win great prizes.

 

Let’s Meet Up In Real Life!

meetup_pittsburgh

This year, the WEGO Health Network team will be hosting the Awards week celebration from Pittsburgh, PA. During the week, Julie, Jackie and Kristen will be hosting a meetup for any local patient leaders. We’d love to be able to put face to a name!

Join us December 7th, 2016 from 7:30 – 9:00pm EST at Local Bar + Kitchen 1515 E Carson St, Pittsburgh, PA 15203. To learn more and to sign up to attend, click here!

 

And The Winner Is . . .

Join us daily on Facebook Live to see who wins each award! With 14 award categories, and 5 finalists in each, we have a lot of amazing Health Heroes to celebrate.screen-shot-2016-11-20-at-5-33-31-pm

And don’t forget about all of our nominees! We had close to 2000 nominees this year, each more inspiring than the next. Take a moment and scroll through these amazing patient leaders.

During these live feeds on the WEGO Health Facebook page, we’ll not only announce the award winners of that day, but we’ll announce the daily winner of our giveaway.

Day of the Week

Award Categories Announced

Time of  Winner Announcement (EST)

Monday 12/5

Best in Show Twitter

Best in Show Instagram

Best in Show Youtube

6pm
Tuesday 12/6

Best in Show Blog

Best in Show Community

6pm
Wednesday 12/7

Best in Show Facebook

Best in Show Pinterest

6pm
Thursday 12/8

Best Kept Secret

Hilarious Health Activists

Advocating For Another

6pm
Friday 12/9

Lifetime Achievement

Health Activists Hero

Best Team Performance

Rookie Of The Year

3pm


Come Celebrate The Patient Voice

Here at WEGO Health, we’re proud of each and every one of you. Make sure to come and participate in our virtual celebration in honor of each and every one of you.

If you have questions, please don’t hesitate to reach out to us! Shoot us an email at awards@wegohealth.com.

We can’t wait to get this party started!

Together, we can be the positive change we want to see in healthcare.

18
Nov

Best in Show: Blog Finalists


Announcing the finalists for the

2016 Best in Show: Blog Award…

 

blog_titled_transparent_2013-10-22-1Whose blog do you absolutely love? Their writing is exceptional, their “voice” admirable, and their writing is just really worth reading. You believe anyone wondering why patients or caregivers would blog about health should read this Health Activist’s blog – it will make the case crystal clear. They have great info, raise awareness, and do whatever they can to help their community through the use of their blog. They may be active on numerous social platforms – but the blog is their bread and butter – and they are a great model of how to be a blogger.

 

Ronny Allan

Bob DeMarco

Puja Rios

David Susman

City Girl Flare