Be a Cure HHT Everyday Hero

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Giving is about more than money.
Giving is working together to make a difference.
Giving is being an Cure HHT Hero.

This year is all about empowering yourself and others to ACT now and lead the Cure HHT mission! And joining the cause is even more fun with the new Cure HHT Everyday Hero event site.

How it works:

everyday hero

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Your options as an Everyday Hero are literally limitless! Get creative and start your own Cure HHT event.

Have a school bake sale - Host a cheese and wine night with friends - Run a 5k or Tough Mudder - Throw a Zumbathon - Organize a community bingo night - Make and sell jewelry at a craft fair - Collect bets from Superbowl games.

Join these Cure HHT Heroes:

Legislative Toolkit

Here is all the information, pre-written letters, materials, instructions and training you need to make an effective advocacy effort. There are no excuses - it's time to ACT NOW .

Email Your Legislators

Support bills and message your legislators  and ask them to support amendments that will make a positive impact on the lives of those who have HHT.

 

Ask Family, Friends, Co-Workers, and Neighbors to Contact Their Legislators

Send your family, friends, co-workers, neighbors, etc. an email with information about legislation and ask them to support you by contacting their legislators.  Every entry is directly emailed or delivered to your representative. Each office keeps records on how many emails they receive.

You don’t have to have HHT to be an advocate!

 

Follow-Up with Your Legislators

Following-up with your legislator is very important! Check our sponsorship list regularly to see if your representative has joined the Cure HHT mission. If not, get on the phone with them or send them a letter.

> Find Your Senator    >Find Your House Representative

Don't forget to send your Senator or Representative a thank you letter following the meeting. Here are some templates for you to work from!

> Senate Thank You   > House Thank You

District Visits

Meeting with your legislators at home in their district offices is one of the most effective methods in gaining their support and co-sponsorship. Legislators are usually in their district office when Congress is in recess.

Additional Legislative Documents

HR 1849 HHT DATA Act Summary 2015

HR 1849 HHT DATA Act Dear Colleague Letter

Sample - Dear Congressman Letter

Senate - Sample Appointment Request

House - Sample Appointment Request

CDC Final Report - HHT June 2009

Advocacy 101

These resources will help you successfully and locate your Senators and House Representatives as well as guide you through the communication and appointment process.

How a Bill Becomes a Law - written explanation

How a Bill Becomes a Law - chart diagram

Glossary of Congressional and Legislative Terms

 

Lay Down the Law with Cure HHT

January 13, 2016
Presented by: Mark Vieth, Senior Vice President, CRD Associates and Marianne Clancy, Executive Director, Cure HHT

Presenter

Mark Vieth is a Senior Vice President for CRD Associates, a government relations, public policy and strategic development firm in Washington, DC.  Mark has served as the Legislative Advisor for Cure HHT for the last six years. He has helped clients secure federal funding, build new partnerships with federal agencies and mobilize grassroots to advocate for legislation pending in Congress.

Marianne Clancy became the first Executive Director of Cure HHT in 2001. Prior to that, Marianne served on the HHT Foundation board of directors, founded a health care consulting company specializing in trans-dermal drug delivery and oral health care, worked in national health care management with Oral-B Laboratories, a Gillette Company for 14 years, and held faculty positions at Forsyth Dental Center, Boston University and Tufts University School of Dental Medicine.

 

Webinar

Join Cure HHT Executive Director Marianne Clancy and Legislative Advisor Mark Vieth for a behind-the-scenes look at the HHT DATA Act. Learn what passage of the act would mean for you, what progress has been made since the act was introduced this past April, the most recent push for senate sponsorship and what you can do to lay down the Cure HHT law.

Webinar Highlights

  • Congress 101 - who are your Members of Congress, when are they in session in DC and their home offices, how are their Congressional offices staffed?
  • HHT Advocacy Initiatives
  • HHT Diagnosis and Treatment Act (H.R.1849) - why is it needed, what does it do, what will happen when it's enacted, what is the status of the bill, and how can I help?
  • HHT Legislative Fact Sheet and Website links provided in the webinar

ACT NOW

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.

 Donate Now Button - Blue Rectangle

 (Please write "webinar" in comment section of donation form)

Ask the Doctor: Mark Chesnutt

Q: What are the instances when it is permissible for an HHT patient to take a blood thinner?

Dr. Mark Chesnutt, Director of Oregon Health and Science University HHT Center: Many decisions in both life and medicine require that one balances the potential benefits and risks of an action, an intervention or a medication. This is true when one considers the use of blood thinners, especially for a person with HHT.

Blood thinners have been shown to significantly reduce the risk of harm and/or death in a number of conditions, including, but not limited to, heart attacks, atrial fibrillation, stroke and blood clots (both deep venous thrombosis and pulmonary embolism). However, in any patient, blood thinners increase the risk of undesired bleeding. The risk of nosebleeds and gastrointestinal bleeding while taking blood thinner may be higher in some people with HHT compared to those without HHT.

Experience from many HHT Centers of Excellence suggests that at least many HHT patients who take a blood thinner are able to do so without a serious complication and, therefore, are able to benefit from their use. At the present time, there is no good way to know who will have a complication from a blood thinner. Based on experience to date, there are no absolute contraindications for the use of a blood thinner in a person with HHT; blood thinners can be used with caution when there is a strong indication and potential benefit for their use.

Cure HHT Launches 22nd Center of Excellence

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22nd HHT Center of Excellence in North America

University of Chicago Medicine HHT Center

Chicago, IL

 

“We are delighted that HHT multidisciplinary care will now be a reality in Chicago and the surrounding states,” said Cure HHT Executive Director Marianne Clancy.

The University of Chicago Medicine is the only facility in Illinois that specializes in the diagnosis, evaluation and treatment of HHT. This newest HHT Center of Excellence features a multidisciplinary team, led by Dr. Issam Awad, which coordinates care for adult and pediatric patients. Whether a patient needs genetic screening or a complex procedure, Dr. Awad’s team of specialists has the knowledge, resources and expertise to provide advanced and comprehensive care.

Dr. Awad is an internationally recognized leader in neurosurgery. As the John Harper Seeley Professor of Surgery, and Director of Neurovascular Surgery at The University of Chicago Medicine, he specializes in surgical management of neurovascular conditions affecting the brain and spinal cord, including 30 years of experience with managing HHT related problems. Dr. Awad is looking forward to a fruitful and contributive partnership with Cure HHT and the HHT patient community.

Dr. Umesh Dyamenahalli, Associate Medical Director

Dr. Umesh Dyamenahalli, Associate Medical Director

Dr. Award Issam, Medical Director

Dr. Awad Issam, Medical Director

Medical Director: Issam Awad, MD, MSc, FACS

Program Coordinator: Shannon Love, RN, BSN

Make an Appointment: 773-702-4452

Website: www.uchospitals.edu/hht

HHT Specialties at U Chicago Medicine:

Cardiology
Dermatology
Gastroenterology
Medical Genetics
Hematology/Oncology
Neurointerventional Surgery
Neurology
Interventional Radiology
Neurovascular Surgery
Otolaryngology (ENT)
Pulmonology/Critical Care
Pediatric Cardiology
Pediatric Dermatology
Pediatric Neurosurgery
Pediatric Pulmonology
Pediatric Surgery