LIVE Webinar Series

The Fall 2017 Webinar Schedule is NOW AVAILABLE!

Cure HHT has always believed that knowledge is one of the most powerful tools for the HHT community. It is the key, not only to understanding the effects of HHT, but also to spreading awareness and advocating effectively for yourself and your family.

The Cure HHT webinar series was established to inform patients and physicians of the latest information in HHT treatment, medicine and research, but also to build and strengthen the HHT community. The live webinars feature physicians and scientists specializing in HHT, with each webinar including a Q&A period.

Click on the links below to REGISTER for each of the webinars offered by Cure HHT this fall.

Don't forget to invite your primary care physicians and family members to attend as well!  A better understanding of HHT will directly improve the quality of life for your family.

 


 

It is through the generosity of donors in our community that we can continue to provide this valuable education for you and your family. Please consider showing your support by making a donation (please mention “webinar” in the comment section). We are grateful for any contribution.

 

 

Ask the HHT Doctor

Presenter

Dr. James Gossage is Director of the Pulmonary Vascular Disease program and the HHT Center of Excellence at Augusta University. He received his medical degree from Rush Medical College followed by a residency at Barnes Hospital and a fellowship in Pulmonary and Critical Care Medicine at Vanderbilt University. Dr. Gossage has taken care of HHT patients since 1995 and opened up his HHT Center of Excellence in 2003. In 2008 he was appointed Medical Director of the HHT Foundation, now known as Cure HHT. Dr. Gossage’s research and clinical interests include HHT, pulmonary hypertension, pulmonary embolism, and right heart catheterization.

Webinar

Join Dr. James Gossage as he answers YOUR questions about HHT treatment and management. It's a one-on-one with your doctor in the comfort of your own home. Each question was submitted by a member of the Cure HHT community to ensure topics you care about are discussed.

 


Webinar Highlights

  • How are HHT and Pulmonary Hypertension connected?
  • What HHT symptoms can be treated with Avastin?
  • Can you have a lung AVM that doesn't appear in a CT Scan?
  • Should an asymptomatic family member be screened for HHT?
  • How close are we to a cure for HHT?

 

ACT NOW

  • SHARE this information and webinar link with your family members affected by HHT

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. Patient and physician education is the key to increasing HHT awareness and preventing unnecessary complications of this disease. This webinar series is just one of many ways we accomplish this mission.

We are grateful to the donors of Cure HHT for making this, and all webinars, possible.

 

 

HHT: There’s an App for That

Presenter

Dr. Jeffrey Terrell received his medical degree from Harvard Medical School and received his training at Massachusetts Eye & Ear Infirmary. He is currently a Professor in the Department of Otolaryngology - Head and Neck Surgery at the University of Michigan, where he has served on the faculty for 23 years. Dr. Terrell is board certified in Otolaryngology and Medical Informatics and is a full-time Rhinologist who has been treating HHT patients his entire career.  We are grateful for Dr. Terrell’s insight into the needs of HHT patients and his desire to meet those needs through the development of an HHT App.

Webinar

Join Dr. Jeffrey Terrell to discuss the exclusive HHT app being developed by his Michigan team. In the near future patients can track medical treatments, test results, and nosebleed frequency as well as get personalized notifications and reminders to help them manage their HHT.  The app will also provide access to  Cure HHT educational information on their mobile device.

 


Webinar Highlights

  • Why a health App is important for patients with a chronic disease
  • Design framework for HHT App
  • Proposed features of the HHT App
  • Apple's "CareKit" components
  • HHT App Development Survey - We need your feedback on the functionality of this tool

ACT NOW

  • SHARE this information and webinar link with your family members affected by HHT

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. Patient and physician education is the key to increasing HHT awareness and preventing unnecessary complications of this disease. This webinar series is just one of many ways we accomplish this mission.

The development of an HHT App is for the benefit of the HHT patient and their physician. It is through the generosity of donors in our community that we can make an HHT App possible for you and your family.  Please consider investing in the development of this tool. You can make a donation to this project at (mention “HHT App” in the comment section). We are grateful for any contribution.

 

What’s the SKINny on HHT?

Presenter

Dr. Richard Antaya is Professor of Dermatology and Pediatrics and Director of Pediatric Dermatology at Yale University. He received his medical degree from Tufts University and completed his pediatric residency at Tripler Army Medical Center. He practiced general pediatrics for three years in the Army and completed a dermatology residency at Duke University prior to joining the Yale faculty. Dr. Antaya chairs the monthly multidisciplinary vascular anomalies conference and performs laser surgery for HHT patients at a weekly Vascular Anomalies Clinic in New Haven, CT, as part of the Yale HHT Center.

 

Webinar

Join Dr. Richard Antaya for a discussion about what’s hiding in and under those red spots on your skin, lips and tongue known as telangiectasias. Topics include an in depth look at various types of telangiectasias and the laser therapies used to treat them followed by a question and answer period.

Originally presented at #HHTFamCon.


Webinar Highlights

  • Understanding the anatomy of skin telangiectasia
  • Impact of skin on HHT diagnosis
  • Explanation of all laser treatment options
  • Case studies
  • Pulsed Dye Laser Handout

ACT NOW

  • SHARE this information and webinar link with your family members affected by HHT

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. Patient and physician education is the key to increasing HHT awareness and preventing unnecessary complications of this disease. This webinar series is just one of many ways we accomplish this mission.

It is through the generosity of donors in our community that we can continue to provide this valuable education for you and your family.  Please consider showing your support by making a donation at https://curehht.org/donate/general/ (please mention “webinar” in the comment section). We are grateful for any contribution.

 community

empowerMEnt: The Possibilities are Limitless with ME and Cure HHT

Presenters

heather-bohannonHeather Bohannon, Director of Development for Cure HHT, has over 20 years of nonprofit experience. She has worked with national nonprofits, local grassroots fundraising, nonprofit chapter leadership and national peer-to-peer fundraising programs. Her career experiences provided significant opportunity to impact all aspects of nonprofit work. Heather’s analytical approach to fundraising is a tremendous asset to Cure HHT.

 

allyAllyson Clancy, Development Associate for Cure HHT, is our fundraising events guru and one of the people who can bring HHT awareness to your community. She comes with 5 years of experience in nonprofit administration, operations and fundraising, and has been affiliated with Cure HHT for over a decade. Ally manages all of our fundraising campaigns, and works with volunteers across the globe to create amazing HHT events. These events range in size and type, and all start with ideas from our HHT community. So, if you have an interest in creating an impact for HHT through a fundraising or awareness event, Ally is the one to make it happen.

 

lauren-linhardLauren Linhard is Cure HHT's Communications Associate. Prior to joining us two years ago, Lauren worked as a reporter for five years after receiving a journalism degree from American University. Lauren’s primary focus is on strengthening HHT awareness through digital and print mediums while expanding story sharing, legislative, media and event engagement.

 

 

To get involved in HHT awareness, call the Cure HHT office at 410-357-9932 or email [email protected]

Webinar

The Year of Empowerment (2016) has been about taking charge of your healthcare by taking a stand for HHT legislation, participating in HHT research, strengthening HHT awareness and connecting with HHT Centers of Excellence.

As the Year of Empowerment comes to an end, Cure HHT wants to ensure you have everything you need to continue being your own advocate and strengthening awareness for HHT.  Though we are a diverse community, we achieve the most when working together. Together, the possibilities are limitless.

Originally presented at #HHTFamCon.

Webinar Highlights

  • Learn how to tell your story
  • Creative event ideas
  • Cure HHT resources for a successful event or awareness activity
  • Handout: Cure HHT contact information and resource links

ACT NOW

  • SHARE this information and webinar link with your family members affected by HHT

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. Beginning in May 2016, Cure HHT members will have access to unlimited webinars, discounted conference registration and much more. This is one of two webinars offered this year that will be available to everyone. Please consider joining or renewing your Cure HHT membership so that you can participate in all activities within the HHT community.

 community

HHT Insurance: Are You Covered?

Presenter

Michael Timothy is a licensed insurance agent with US Health Advisors. He’s set a personal mission to use his knowledge to help other HHT families. Michael’s wife and two of his three sons have HHT.

In addition, Michael and his wife, Nichol, are committed to helping HHT families find affordable health coverage. If you want help evaluating the insurance plan options for your family, contact Michael at [email protected] or (908) 334-7861.

 

Webinar

Join Insurance Agent Michael Timothy to learn about the best insurance practices for HHT patients to save the most money while having access to the best treatment. Topics include insurance basics, Obama Care fact or fiction, explanation of plans and risk exposure.

Webinar Highlights

  • Deductible, Co-insurance and Co-pays
  • Five (5) main types of health insurance
  • Different Plans - HMO, PPO-POS, First dollar payer
  • Affordable Care Act ("Obamacare") and what it means for HHT patients
  • Supplemental Insurance and Life Insurance

 

ACT NOW

Cure HHT members will have access to unlimited webinars, discounted conference registration and much more. Please consider joining or renewing your Cure HHT membership so that you can participate in all activities within the HHT community.

community

CureHHT-Logo-Lockup-RGB

 

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission.

In the Know – HHT and Kids

Presenter

Madan-Khetarpal, SuneetaDr. Madan-Khetarpal is the Clinical Director of Medical Genetics, associate professor in the Department of Pediatrics and associate professor of Ophthalmology. She has been practicing for over 27 years with a special emphasis in birth defects as well as the diagnosis and management of a variety of hereditary connective tissue disorders, including HHT.

 

 

Webinar

Join Dr. Suneeta Madan-Khetarpal, Co-Director of the University of Pittsburgh HHT Center at Children's Hospital of Pittsburgh of UPMC, to discuss unique features of HHT in children. Through the family tree, these findings aid in diagnosing children with HHT earlier in life, resulting in more effective treatment. There will be time for Q&A after the presentation.

Webinar Highlights

  • Genetic testing protocols
  • Significance of family history in determining HHT
  • Review of several HHT cases

 

ACT NOW

  • SHARE this information and webinar link with your family members affected by HHT

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. Beginning in May 2016, Cure HHT members will have access to unlimited webinars, discounted conference registration and much more. This is one of two webinars offered this year that will be available to everyone. Please consider joining or renewing your Cure HHT membership so that you can participate in all activities within the HHT community.

 community

ABCs of AVMs: Vascular Malformations of the Lungs and Brain in HHT

Presenters

Conrad, Miles UCSFDr. Miles Conrad is Associate Clinical Professor in the Department of Radiology at UCSF and Co-Director of the UCSF HHT Center of Excellence.  Dr. Conrad received his MD from Dartmouth Medical School and his MPH from Harvard School of Public Health. He completed a Diagnostic Radiology residency and a fellowship in Interventional Radiology at University of Arizona. He specializes in the treatment of PAVMs.

 

Hetts, Steven UCSFDr. Steven Hetts is Associate Professor of Radiology, Co-Director of the UCSF HHT Center of Excellence and Chief of Interventional Neuroradiology at USCF Mission Bay Hospitals. Dr. Hetts graduated from Harvard Medical School, and completed a Diagnostic Radiology residency and fellowship in Diagnostic and Interventional Neuroradiology at UCSF

 

 

Webinar

Join Doctors Miles Conrad and Steven Hetts for a discussion on the diagnosis and treatment of brain arteriovenous malformations (BAVM) and an update on the latest lung AVM (PAVM) treatment followed by a Q&A period.

Webinar Highlights

 

ACT NOW

Cure HHT members will have access to unlimited webinars, discounted conference registration and much more. Please consider joining or renewing your Cure HHT membership so that you can participate in all activities within the HHT community.

community

 

 

CureHHT-Logo-Lockup-RGB

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. Beginning in May, Cure HHT members will have access to unlimited webinars, discounted conference registration and much more.

Pumping Iron in HHT

Presenters

Totonto Team - Ronalee Rbert Zhenxiu Cheng, Rose Pantalone Marie FaughnanThe webinar on Pumping Iron in HHT is being presented by 4 members of the multi-disciplinary team at St. Michael's Hospital, HHT Center in Toronto, Canada.

The team presenting tonight consists of Dr. Faughnan who has been working with HHT patients for almost 20 years and is the director of the HHT program.  Ronalee Roberts, team dietician; Rose Pantalone, HHT clinic nurse; and Zhenxiu Cheng, a nurse in the Medical Day Care where patients receive their iron.

Webinar

Join this team of experts from the HHT Center of Excellence at the University of Toronto/St. Michael's Hospital for a discussion of iron deficiency anemia in HHT.  Learn how to “pump iron” with the right diet, medications and treatments.

Webinar Highlights

  • Causes of anemia
  • Ways to increase iron supply
  • How to get the most out of the iron in your diet
  • Iron treatments and side effects
  • What are the risks/benefits of iron supplements and iron infusion
  • Handout - Pumping Iron in HHT

ACT NOW

  • SHARE this information and webinar link with your family members affected by HHT

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. Beginning in May, Cure HHT members will have access to unlimited webinars, discounted conference registration and much more. Please consider joining or renewing your Cure HHT membership so that you can participate in all activities within the HHT community.

 community

Insight into the Formation and Regression of Brain AVMs from Notch4 Model of the Disease Relevant to HHT

Presenter

Wang, Rong PhDRong Wang, Ph.D. is a Professor and Mildred V. Strouss Endowed Chair in Vascular Surgery, in the Department of Surgery at the University of California, San Francisco. Dr. Wang had the distinction of working as a post-doctoral fellow in the laboratory of Michael Bishop, MD, who is a winner of the Nobel Prize in Medicine and Chancellor of UCSF.

Dr. Wang's team is engaged in state-of-the-art research involving key proteins necessary for blood vessel growth (angiogenesis) and arterial growth (arteriogenesis). They have found the Notch 4 protein can cause dramatic blood vessel enlargement in adult animals and the focal adhesion kinase protein is essential to maintain existing blood vessel structure. Her laboratory was the first to publish that Notch mutations can cause AVMs in mice, and correction of a causal molecular lesion can lead to reversal of the disease progression, opening a new line of inquiry linking this disease to genes crucial for arterial-venous differentiation.

Webinar

Join Dr. Rong Wang for a discussion of her recent discoveries presented at the 2015 International HHT Scientific Conference. These findings provide unprecedented insight uncovered from studying Brain AVM formation, and regression, in real time with high resolution microscopy in live animals with HHT. These studies may advance our understanding of how HHT disease is initiated and inspire new strategies in the development of treatment options.

Webinar Highlights

  • Explanation of notch signaling and its relevance to HHT
  • Research shows notch signaling is increased in human Brain AVMs
  • Notch and HHT2 (Alk1 or ACVRL1) share remarkable similarities
  • Discussion about AVM regression
  • Handout - What is Notch?   (an explanation provided by Dr. Christopher Hughes, Chairman, Cure HHT Global Research and Medical Advisory Board)

ACT NOW

  • SHARE this information and webinar link with your family members affected by HHT

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. If you found value in this information, please consider making a donation NOW to keep this initiative moving forward. It is through the generosity of our donors that we can continue to provide this valuable education to the HHT community.

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