Top 10 | Advocating for Another



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The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Advocating for Another Award

Sometimes the top Patient Leaders aren’t patients, but rather caregivers and for anyone who is a patient, you know just how much your caregiver supports you. Below are the Top 10 Advocating for Another Patient Leader all-stars, whose passion for advocacy comes from the love of another.

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Autism_irl | Autism Patient Leader

2019 Advocating for Another Winner

“I am a BCBA and Autism Sibling who has spent the past 10 years working in the autism field. Two years ago, I moved back to Upstate NY to help my family care for my brother, Robert, who is autistic. Robert has some severe skill deficits and behavioral excesses that prevent him from living an independent life. I am using my knowledge in the field of ABA and my experience as an autism professional to help him gain necessary life skills in order to live a fulfilling, successful, and happy life. Glimpses of my brother’s journey as an autistic adult can be seen on our Instagram page. Sharing our lives on social media has allowed me to connect with so many amazing individuals in the autism community and has afforded me an outlet to advocate on behalf of individuals who are unable to advocate for themselves.”

Follow the WEGO Health Award winner on social!

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Priscilla Maass | Autism Patient Leader

2019 Advocating for Another Finalist

“12 years ago my daughter was diagnosed with ASD. Like most parents do, we were instant advocates for our child working to ensure a quality future for her. 3 years ago my husband had this crazy idea that our family could also advocate for others by sharing our day to day lives as an autism family. What started with a small YouTube channel has grown into a social media presence that helps hundreds of thousands of people around the world. I am personally able to form bonds with fellow autism moms and give experience and advice on navigating through things like puberty, meltdowns, bad days, and good ones. I stress the importance of not allowing a bad moment to define your day or a diagnosis to define your life. I help other moms to realize the importance of taking time for themselves and how that makes you a better caregiver. If I had to describe myself in one word it would be “positive”. I just went through weight loss surgery to ensure I was around as long as possible for my daughter. With sharing my fears, struggles, and triumphs I’ve created a small family of other caregivers and moms that share their own weight loss journey. We are so much more than a YouTube channel. We have found that by sharing our outlook on life we can provide others with hope.”

Learn more about Priscilla and follow her advocacy journey.

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Pascazia Mazeze | Sickle Cell Disease Patient Leader

2019 Advocating for Another Finalist

“In 2015, comments like “Your son doesn’t look like he has sickle cell disease” passionately pressurized me to start thinking of the ways in which I can reach so many others, especially parents and caregivers to accept and take good care of their sickle cell children and also avoid the myths that have been built over sickle cell disease. My free time was now dedicated to help families affected direct or indirect with sickle cell disease, spending time to educate them and raising awareness on sickle cell disease to the community around me. In a society that is less educated and less aware about sickle cell disease I DECIDED TO BE THE CHANGE.”

Click here to follow Pascazia as she makes a difference for sickle cell families.

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LeAnna Headley | Pediatric Cancer Patient Leader

2019 Advocating for Another Finalist

“Childhood cancer is the leading cause of death by disease, killing 7 kids today in the United States. It is an epidemic that is talked about very little. In the past 30+ years, only 3 drugs have been developed for kids, while hundreds have been developed for singular adult cancers. Children are being given adult drugs in pint-sized form and it is not fair. I decided I wanted to do something more tangible for these kids so I began sending and delivering care packages all across the US to kids fighting. I have had the absolute privilege of meeting these families and seeing the heartache first hand. I have heard the cries, seen the pain and lack of treatment options and it has only made me more passionate about the cause. These kids have become friends to me, some even family.”

Join LeAnna as she makes a difference for children with cancer.

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Tory Aquino | Juvenile Arthritis Patient Leader

2019 Advocating for Another Finalist

Tory advocates for her daughter, Mariah, and fights for all families affected by juvenile arthritis. On social media, Tory uses the handle Mariah’s Movers where she creates community, shares tips, and helps to drive research forward.

Click here to follow Tory on social.

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Isaac Okello | Sickle Cell Disease Patient Leader

Isaac Okello has been doing Sickle Cell advocacy for the last three years in Uganda.He supports and contributes immensely to improve quality of life of individuals living with sickle cell disease across the Country . He continues to advance care and treatment by supporting research and advocating with the government on behalf its constituents. He also liaises with community agencies and stake holders to bring more awareness to this disease. Isaac Okello is the Founder of Raising Hope International Friends (RHIF) organization based in Uganda that does Awareness of Sickle Cell Disease in Uganda. He is currently the Executive Director for Raising Hope International Friends (RHIF). RHIF has a strategy laid to educate and sensitize 2,000,000 Ugandan, test 100,000 Ugandans and 2,000 Sickle Cell victims on improved care by 2030. RHIF is purposed to build confidence, raise self-esteem, improve the health status and empower the community we work with to participate fully in their own affair and decision making to facilitate community based projects. #strongerTogether

Click here to follow Isaac.

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PodcastDX | Rare Disease Patient Leader

PodcastDX is a weekly interview based podcast series. Patients provide experience based medical insight, in a peer to peer format. Many Americans turn to friends and family for support and advice when they have a health problem. Since people’s networks are expanding to include online peers, particularly in the crucible of rare disease, we decided to implement a podcast series to interview and discuss various diagnoses with actual patients. Health professionals remain the central source of information for most Americans, but “peer-to-peer healthcare” is a significant supplement.

Want to connect with PodcastDX? Click here.

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Melissa Talwar | Fibromyalgia Patient Leader

Melissa is ready to bring positive healthcare experiences to the Fibromyalgia community! Her chronic pain journey began at the age of 14 and after a long 24 year journey of decline and a laundry list of diagnoses, she took her health into her own hands. Through biohacking and patient empowered motivation she has given herself a break in decline and focused her energy on building the nonprofit organization, International Support Fibromyalgia Network. #SupportFibro believes in collaboration. It is open, participatory and dedicated to educating, advocating and inspiring the fibromyalgia community.

Want to add Melissa to your tribe? Click here.

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Cori Register | Cancer Patient Leader

Even as she fights her own battle against a Ewing’s sarcoma relapse, Cori pours a great deal of energy into what she calls her “life’s passion.” She started FAM – Fighting All Monsters, something “that continues to give me purpose and motivation to keep going, and keep helping as many families suffering from pediatric cancer as possible.”

Find out where to follow Cori.

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Gustavo San Martin | Multiple Sclerosis Patient Leader

When Gustavo was diagnosed with multiple sclerosis in 2011, he decided to use his business skills to improve the lives of other Brazilians living with MS. AME – Amigos Múltiplos pela Esclerose was born and Gustavo continues to stay busy advocating for others facing the same disease he does.

Follow along as Gustavo makes a difference.

These tireless advocates are making a big difference. Let’s show them some love with a follow!

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