Curry on Tukkin Taking Off January 1

One Australian team is certainly up to the challenge when it comes to taking on HHT!

rickshawsGrant Maw and Philip Kendall from Queensland’s Fraser Coast town of Howard are going to test their metal on a 3000 kilometer journey down the entire Indian West Coast on a seven horsepower rickshaw, commonly called a Tuk-Tuk.

What makes this challenge remarkable is that they must complete the event in 14 days, without any backup or support, through some of the roughest terrain on the subcontinent.

So why are these two highly qualified IT professionals prepared to risk life and limb on what they parochially call their 3000Km Curry Run?

grantAs Grant Maw explains, “This crazy adventure is really about doing something special for two very deserving charities that normally do not receive mainstream support or recognition.” Sure, it’s risky,” he adds, “but we both want to do something that will make a difference and really force us both out of our comfort zones."

Their quest starts Jan. 1, 2014 in the north-west Indian desert city of Jaisalmer and finishes a two weeks later in the southern city of Kochin. “I’m expecting 3000 km’s of shear torture on the Tuk-Tuk,” says Philip Kendall. “We’ve both been brushing up on our two-stroke motor maintenance skills, particularly on emergency repairs. Tuk-Tuks are loud, uncomfortable, and prone to breaking down a lot. Some would consider them a questionable long distance, off-road machine and possibly the least suitable vehicle on the planet for covering the entire subcontinent in two weeks.”

philProceeds from this unique adventure will help to raise awareness and fund research to find a cure for Hereditary Haemorrhagic Telangiectasia (HHT). This inherited genetic disorder of the blood vessels affects more than 1 million people worldwide. There is no known cure for this devastating condition and if left untreated can result in stroke, haemorrhage and in many cases, premature death.

The second organisation to benefit will be Cool Earth – an environmental charity that works in partnership with indigenous communities to help protect rainforests that without intervention will be destroyed within the next 18 months.

The team explains that 100 percent of all money raised will go to the charities. None will be used to fund their trip expenses.

To actively support the team’s fund raising efforts, or if you would like more information, please visit www.curryontukkin.com.  You can also contact Grant Maw at [email protected].

The HHT Foundation will be following Grant and Philip closely throughout their journey. We're grateful that they have chosen  the HHT Foundation as one of their beneficiaries and look forward to hearing all about their adventures! 

Give the Gift of Family History this Thanksgiving

Your mom's eyes, your uncle's nose, your grandmother's sweet potato pie and HHT. These are all passed down through generations, but so many families miss the crucial conversations that they need to have about HHT symptoms, treatments and overall health.

Put your family's history in writing with a free Family Health History Toolkit this year. The Surgeon General recommends that families start conversations about their health, since it can help your doctors with diagnoses and can tell you about your risk factor for certain diseases.

You can have a free sent to you by clicking here or download the guides from the links below.

My Family Health Portrait

Guide Genetics Health

We wish you a Happy Thanksgiving and encourage you to have these potentially life-saving conversations.

University of Colorado Hospital named HHT Center of Excellence

The 16th HHT Center of Excellence is the Rocky Mountain Region’s Leading Academic Medical Center

University of Colorado HospitalProviders at University of Colorado Hospital (UCH) are also faculty members at the University of Colorado Hospital School of Medicine and therefore have to keep up with – and often lead – the latest in research and medical treatments. Co-Directors of the 16th HHT Center of Excellence are Brian Graham, M.D. and Janette Durham, M.D.Dr. Graham is an Assistant Professor of Medicine in the Division of Pulmonary Sciences & Critical Care Medicine and has been on staff since 2010. “Treatment of patients with complications of HHT has been part of my practice throughout my career.” He feels strongly that “the establishment of HHTCenters to treat these patients has significantly improved their care, by organizing multiple care providers into focused teams.” As a past president of Society of Interventional Radiology,Dr. Graham has watched the formation of centers throughout the country hoping to become one once all the clinical components fell into place at UCH. Multiple teams managing complex medical problems at UCH has proven to be ideal for superior specialized care.

Dr. Durham is a professor of Radiology as well as an Interventional Radiologist and has been on staff for 26 years. From her perspective, she feels strongly that “being an HHT Center of Excellence allows us to offer HHT patients with comprehensive diagnosis and treatment of all aspects of their care, delivering individualized medicine ranging from more common issues to more complex care including management of pulmonary and cerebral arteriovenous malformations.”

HHT Foundation International’s Board of Directors has made increasing access to HHT professionals a top priority. By growing the number of HHT Centers of Excellence, diagnosis and treatment of HHT disease becomes more affordable by decreasing travel costs and increasing the likelihood of insurance coverage.

In 2008, HHT Foundation established a committee, led by Marianne Clancy, Executive Director and Dr. James Gossage, Medical Director, to develop a process that evaluates the medical expertise and viability of HHT Centers. While HHT Foundation and HHT Centers of Excellence are separate entities, we work together in a collaborative effort to advance the diagnosis, treatment and management of HHT disease.

HHT Specialists at University of Colorado Hospital

  • Cardiology
  • Gastroenterology
  • Genetics
  • Hematology
  • Hepatology
  • Interventional Radiology
  • Neurointerventional Radiology
  • Otolaryngology (ENT)
  • Pulmonology

To become a patient at UCH Aurora, contact Cathy Sunday, RN at (303) 724-7757.

16th HHT Center of Excellence at UCH Co-Directors

Dr. Brian Graham, Co-Director of HHT Center of Excellence at UCH Brian Graham, M.D.

Dr. Graham is an Assistant Professor of Medicine in the Division of Pulmonary Sciences and Critical Care Medicine at the University of Colorado, and has been on staff on the University of Colorado Hospital since completing his training in

2010. He is board certified in Internal Medicine, Pulmonary Medicine and Critical Care Medicine. In addition to the care of patients with HHT, he also treats pulmonary hypertension.

 

 

 

 

 

Janette Durham, M.D.

Dr. Durham, Co-Director of HHT Center of Excellence at UCHDr. Durham, and professor of Radiology, is an Interventional Radiologist who has been
on staff at the University of Colorado Hospital for 26 years. Dr. Durham is certified by the American Board of Radiology and has a certificate of added qualification in Interventional Radiology. She is currently the Medical Director for Interventional Radiology.

 

 

 

 

 

 

Print information here

Save the Date!

Save the Date for the HHT Conference July 2014

Save the Date July 18-20, 2014 in Santa Clara, CA!

Registration for our 17th HHT Foundation Patient & Family Conference opens this spring.

Shop for the Holidays and Help the HHT Foundation

 HHT Foundation    International

Have you started your holiday shopping yet? If you're an Amazon shopper, please use smile.amazon.com for your gifts! It's the same Amazon experience that you're used to, only 0.5 percent of your eligible purchases will be sent to the HHT Foundation--at no cost to you!

To get started, just click on the "Learn More" button and start shopping as normal. Please pass this link along to family and friends so they can also support HHT in their online shopping.

This link will work throughout the year, so please use it for all your online Amazon shopping!

HHT and Children: What Every HHT Parent Should Know Webinar Recording

On October 30, the HHT Foundation's webinar series kicked-off a presentation from Dr. Andy White. HHT and Children: What Every HHT Parent Should Know shared critical information for caregivers who work with HHT children. The presentation is followed by a Q&A where Dr. White addresses pressing concerns from attendees.

Stay tuned for news on our next webinar!