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Tag: Advocating for Others

#WEGOHealthAwards Winners Series Podcast: Tory Aquino

There are many reasons Patient Leaders get involved in advocacy, Tory’s just happens to be her daughter.

 Tory’s  daughter, Mariah, was active and full of energy from birth, so it was alarming when her daughter started complaining of joint pains and suddenly became inactive at age four.  The cause of Mariah’s suffering was a mystery to her doctors until she finally was diagnosed in September 2011 with a form of arthritis called Polyarticular Spondyloarthropathy.  

A life changing condition? Certainly. But Tory was ready to fight on her daughter’s behalf.

She created Mariah’s Movers, an organization to raise awareness for juvenile arthritis. In addition to informative and active social media pages, the organization hosts an annual carnival to raise money in hopes of finding a cure.

There are over 300,000 kids living with chronic pain because of this disease. Our goal is to raise awareness and give hope that one day we will have a cure,” Tory shares

The Patient Leader even takes her voice to Harrisburg and Washington DC to advocate for her daughter, and community, yearly. Tory reminds us, “My daughter has juvenile arthritis but juvenile arthritis does not have her!”

So really, it’s no surprise that Tory won the 2016 WEGO Health Awards Advocating for Another Award.  #WEGOHealthAwards Winners Series Podcast host, Shane Schulz had the chance to sit down and chat with Tory to learn more about her mission for the juvenile arthritis community.

Listen to “WEGO Health Podcast – Tory Aquino” on Spreaker.

Be sure to listen to the full interview on Spreaker and iTunes and check out Mariah’s Movers on Facebook, Twitter, and  Instagram.

Missed our last WEGO Health podcast? Listen to the full #WEGOHealthAwards Winners Series Podcast here.


Kristen Long is the Patient Leader Network Coordinator at WEGO Health. Her own health experiences have inspired her to empower other patients and encourage the power of patient advocacy. Check out her blog and follow Kristen on Twitter and Facebook.

Feature Friday: Morgan Gleason, Rare Disease Patient Leader

Do you remember being eleven years old? Most of us can only recollect things related to braces, cooties and the playground.

Morgan Gleason however, has a different story.

Her family knew Morgan to be a normal kid- she spent time with friends, was active, and participated in cheerleading. Then one day Morgan began to notice a sudden weakness, and found it harder to complete flips and stunts. Shortly thereafter, she developed a rash  on her elbows and knees as she continued to grow even weaker.

At age 11, Morgan was diagnosed with a systemic autoimmune disease called Juvenile Dermatomyositis (JDM). This disease is very rare and only affects 1 to 3 in a million people per year- clearly the odds were not in her favor.

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Webinar: How To Be An Empowered Advocate

You were just told that you or a loved one has a health condition or a disability – now what do you do?

Once you get over the denial phase of the diagnosis, only then can you start advocating. Only then can you begin to look for the best healthcare providers, to provide the best quality of care. So how do you become an empowered advocate? 

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Top Patient Leaders Offer Their Best Content Engagement Strategy Tips

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 a WEGO Health Awards week chat, finalists from Best in Show: Facebook and Best in Show: Pinterest provided their insights on the matter.

 

 

The first question we had to ask was how exactly do our finalists determine what content to publish?

They suggest first deciding if you plan to be narrow or wide focused. Are you specifically talking about treatments within your community? That’s more of a narrow focus and you’ll want to stick to content regarding treatments. Perhaps you’re just capturing a day in the life, that’s more of a wide focus allowing a variety of content.

 

Hoping to create an engagement strategy? Learn from top patient leaders @HeadacheHeroin, @AaronBlockerIBD & more! Click to Tweet

 

 

Our finalists also encouraged keeping track of your engagements. You’ll learn more about what your community needs this way. Don’t be afraid to ask the community too! It’s totally okay to ask your followers what they would like to see.

Once you determine the content you want to share, how do you keep track of posting it? The finalists suggest utilizing a content calendar with tools like Hootsuite or Buffer. By doing so, you can lay out all your posts for a period of time, download the full recap to learn just how frequently you should be posting!

 

 

Looking for more resources?

Wondering how to foster a community feel? Download our these tips from top patient leaders!


Kristen Long is the Patient Leader Network Coordinator at WEGO Health. Her own health experiences have inspired her to empower other patients and encourage the power of patient advocacy. Check out her blog and follow Kristen on Twitter and Facebook.

Feature Friday: Martinus Evans – Obesity/Weight Loss Patient Leader

After 20 weeks of physical therapy for a hip pain, Martinus Evans visited an orthopedic specialist hoping for some answers.

“Mr. Evans, it’s because you’re fat and you need to start walking and losing weight.”

Although shocked and embarrassed, Martinus’ response was clear.

Screw walking, I’ll run a marathon.

His doctor said it was the stupidest thing he’s ever heard (#WhatTheHealthcare) but Martinus was determined to do what his doctor felt was the impossible.

Martinus left the doctor’s office, bought some running shoes and created his blog, 300 Pounds and Running.

Starting his blog wasn’t a hard decision, “When someone tells you no you have to prove them wrong.”

And prove him wrong he did. Martinus has ran numerous races the past couple of years.

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