On January 2, 2018 two Australians Grant Maw and Simon Sawyer will embark on a 3000 km (est.1864.114 mi) 14-day journey in an auto-rickshaw for charity.
There is no guide, no set route, no support, and no back up plan.
Grant Maw completed this journey in 2014 and raised over $3K for HHT with his famous Curry on Tukkin fundraiser. They are embarking on this crazy adventure again in 2018 to raise EVEN MORE awareness on a global scale.
You can join in for the fun by following their journey and supporting their fundraising goal to fuel HHT research.
The first HHT Regional Conference of 2018 will take place on the Mayo Clinic Campus in Scottsdale, Arizona where Dr. Karen Swanson, former HHT Center Director at Mayo Clinic Rochester, has begun to organize a team of HHT experts. Conference speakers will be representing HHT Centers in San Diego, Los Angeles, Denver, and Salt Lake City. Read More!
March 3-4, 2018
Mayo Clinic Building
Ashton B. Taylor Auditorium
13400 E. Shea Blvd.
Scottsdale, Arizona 85259
NOTE: Hotel space is very limited due to Major League Baseball spring training. Cure HHT has been able to reserve 16 discounted rooms available on a first come, first serve basis. Any hotel rooms not reserved by January 26, 2018 will be released to the general population so make your hotel reservation now!
When: February 12, 2018 from 5-6pm EST
Presented by: Mark Vieth, Sr. Vice President for CRD Associates
Join Cure HHT Legislative Advisor Mark Vieth for a behind-the-scene look at how Cure HHT can impact federal research funding and awareness of this disease and your role in the process. HHT has received significantly less federal funding than many other rare diseases. This needs to change! It is time to convert the voice of the HHT community into increased federal funding for HHT research. A cure is on the horizon, we just need your voice and engagement in the process to change legislation in Washington, DC and advance HHT research to the next level.
Over the past nine years, Cure HHT has funded legislative activities that resulted in Congressional Language recognizing Hereditary Hemorrhagic Telangiectasia, HHT specific conferences with National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), NIH funding for five HHT researchers to receive $10,542,000 since 2008, the inclusion of vascular malformations in the Department of Defense research funding programs that has allowed eight HHT researchers to receive $15,885,199 since 2015, and the most recent collaboration with the CDC and Hemophilia Treatment Center pilot study.
In 2017, HHT researchers received $5.7MM in federal funding. While this is up from $2.2MM in 2015 and $500,000 in 2012, it is still substantially less than other rare diseases that impact fewer people. For instance, in 2017 Muscular Dystrophy received $82MM in federal funding (affects 1 in 6,500 people) and Huntington’s Disease received $39MM in federal funding (affects 1 in 10,000 people).