Raise Awareness for HHT

 

2020 Awareness Logo

#YouLiftMeUp

Why is June HHT Awareness Month so important? What does raising Awareness have to do with finding a cure? Everything!

This June, we are thrilled to launch our #YouLiftMeUp campaign, inspired by the people who have “lifted us up” in our HHT journeys - those who have been invaluable in our daily lives through creating awareness, treating HHT, or simply providing the emotional support needed to manage this life-changing disease. Whether it is a parent, child, caregiver, doctor, grandparent or friend, we wish to honor the people who have dug deep in discovering what this disease is all about or utilized Cure HHT’s resources and knowledge to educate and create Awareness in their own way.

"Only after three emergency brain surgeries, 1 lung surgery, 1 liver surgery and 13 days in the hospital was I properly diagnosed with HHT!" - Anthony Anzell, PhD

Anthony Anzell, diagnosed with HHT at the age of 15 - standing in front of his graduate thesis in physiology.
Anthony Anzell, PhD diagnosed with HHT at the age of 15 - standing in front of his graduate thesis in physiology.

Nobody embodies our June Awareness theme #YouLiftMeUp more than HHT patient, researcher and advocate, Anthony Anzell, PhD.  After undergoing five major surgeries BEFORE he was properly diagnosed with HHT at the age of 15, Dr. Anzell became determined to dedicate his life to finding a cure for HHT. Dr. Anzell began his journey at the Grand Valley State University where he earned his Bachelor of Liberal Arts and Sciences - Biomedical Sciences. From there, he was accepted at Wayne State University School of Medicine where he would spend the next five years completing his doctorate in Physiology, earning him a coveted PhD!

Just a few weeks ago, Dr. Anzell and his wife Emily moved to Pittsburgh where he will passionately perform his post-doctorate research at the Pittsburgh Department of Human Genetics, searching for keys to understanding HHT alongside prominent HHT researcher Dr. Beth Roman, who has already provided breakthrough research for HHT. This appointment is certainly a dream come true for Dr. Anzell, but also for the entire HHT Community as he embarks on his life’s work. We can expect great things for HHT from this dynamic team!

Click here to view Dr. Anzell's Awareness Month Calls to Action!

How You Can Increase Awareness of HHT

Talk to your Healthcare Providers about HHT

Download a fact sheet to share with your physician. This compact fact sheet can be pinned to your refrigerator for easy access in the event of an emergency, where physicians who may not be familiar with HHT are providing care. The fact sheet includes a brief summary, common complications and misdiagnoses, insurance codes, and available resources to assist in treatment.

Get Involved

Cure HHT hosts several educational events and community building opportunities each year!

Some of these events include regional educational conferences for both patients and physicians, and family walks. Additionally, we offer free educational materials in our extensive Resource Library.

We Walk to Cure HHT
Family

Share Your Story

Sharing your HHT story strengthens and empowers our community.

It can make all the difference to know you’re not alone when living with a rare disease like HHT.

Download a press kit to send to your local newspaper:

You’ll find a news release, Top 20 HHT Facts sheet, and an HHT by the Numbers graphic to use in your local outreach.

You can also share the Top 20 HHT Facts Sheet on social media to raise awareness amongst everyone you know.

HHT Infographic 2020_sized

Here Are More Ways You Can Build Awareness

Participate in Research

Participating in clinical trials and completing scientific research studies can have a huge impact on the diagnosis and treatment of HHT. Click here to learn more about clinical trials and research.

Join the Cure HHT Community

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