HHT Awareness Video
The HHT Foundation is proud to announce our first HHT Awareness initiative .... the video production More Than A Nosebleed: HHT. We all have our own HHT story and path to diagnosis but Bernstein-Rein, an advertising agency, through patient stories and the medical expertise of three HHT Center of Excellence Directors, has created the most powerful media piece the HHT Foundation has ever created. We encourage you to watch the video - it is quite compelling.
As members of the HHT community, you have been asking us to help get the HHT word out to the public at large. The HHT Foundation has taken action by producing this video and the associated toolkits on our website. Increasing HHT awarenss is critical to advancing HHT research and therapies, public and medical professional outreach, and physician education.
Now, it is your turn to Take Action! We need you to spread the word about HHT by:
1. Watching the video
2. Passing the video link, http://video.hht.org, on to your family, friends, local media, and social media sites
3. Contacting your congressional members
4. Utilizing the toolkits and resources available on the HHT Foundation website
Fundraising Toolkits and Ideas
Press and Media Toolkits
All uses of this video, More Than a Nosebleed: HHT, are to benefit the HHT Foundation International, Inc. and all of the families that we support around the world. To maximize the return on our investment, we need your participation in this Awareness Campaign.
WE WANT TO HEAR FROM YOU! Send a message to Cathleen Kinnear and let us know (1) how the video impacted you; (2) how you have used the video to educate more people about HHT; (3) what ACTION you have taken to increase HHT awareness.
Everyone at the HHT Foundation - Board of Directors, Executive Director, and staff - is excited about the opportunities that will present themselves through this HHT Awareness Campaign. Join us in spreading the word about HHT so we can turn hope into reality... A cure for HHT!
NEW HHT Research Published in NATURE
We are excited to announce that the results of HHT Foundation funded research conducted by Dr. Rosemary Akhurst (UCSF) et al. was not only published in the online journal of Nature, nature communication, on January 10, 2012 but it is the featured image of this publication.
As stated in the article, "Hereditary Hemorrhagic Telangiectasia (HHT) shows considerable variation in clinical manifestations, suggesting environmental and / or genetic modifier effects." Pulmonary arteriovenous malformations (PAVMs - pictured) are found in approximately 50% of patients with HHT. Therefore, it is important for us to understand the development of PAMVs in order to determine possible drug therapies.
In 2008, the HHT Foundation awarded Dr. Akhurst a $50,000 research grant to study gene modification. It was anticipated that Dr. Akhurst's research would open up a whole new area of investigation as it addressed a fundamental question in HHT - What gene(s) act in concert with endoglin and ALK1 to predispose certain patients to the development of PAVMs? It was thought that this modifiable gene, in stark contrast to the original two genes (which are receptor genes and difficult to target for the formulation of therapeutic agents), may give us an easier pathway for treatment. This was the first HHT Foundation study to be funded that partners basic laboratory research with clinical research and was conducted in collaboration with HHT Centers in France and The Netherlands.
The research is now complete and the results have been published in NATURE's online journal. Dr. Akhurst et al. "analysed two European cohorts of patients and identified single nucleotide polymorphisms in PTPN14 that are associated with the presence of pulmonary malformations". According to Dr. Akhurst, "This is a basic study in molecular mechanism. We have identified a gene that differs between individuals and, depending on which form of the gene is inherited, this influences the risk for PAVM in HHT patients. We have also shown that this gene connects into the ACVRL1 and EphrinB2 Pathways. This tells us more about molecular pathways downstream of ACVRL1, which is essential for future drug development or drug strategies (for HHT and for angiogenesis in general). "
READ (pdf) the paper entitled, "Mouse and human strategies identify PTPN14 as a modifier of angiogenesis and hereditary hemorrhagic telangiectasia", that was published online on January 10, 2012 in nature communication (scroll to the bottom of the page).
CLICK HERE to read about the other research studies that were funded by the HHT Foundation in 2008.