Announcing HHT Young Research Scholar Awards

research imageCure HHT, formerly known as HHT Foundation International, Inc., is launching the HHT Young Research Scholar Award Program, designed to attract new researchers into the field of Hereditary Hemorrhagic Telangiectasia (HHT). Five awards of $30,000 will be made in this first round.

 

 

Applications are encouraged in the following areas:

  • Basic mechanism of AVM formation
  • Signaling downstream of Alk1 and Endoglin
  • Cellular crosstalk in HHT
  • Stem cells in HHT
  • Modifier genes
  • In vitro and in vivo HHT models

Funding Period and Amount of Award:  One year up to $30,000. No overhead or indirect costs will be provided.

Eligibility:  Applicants must hold a Ph.D. and be no more than 5 years beyond completion of their post doctoral training. The research project must be conducted under the supervision of a mentor who is an established investigator with an active and productive research program. Eligibility is NOT limited to those investigators with past experience in HHT research. International applications are welcome.

 

Important Dates

Letter of Intent DUE - December 15, 2014

  • Limited to 1 page, including a summary of the project and details regarding eligibility of the applicant

Application  DUE - January 15, 2015

  • Invited applications will undergo a peer-review process based on structured review review criteria by the Cure HHT Research Program

Notice of Award - March 15, 2015

 

If you have any questions, please contact [email protected] or VIEW the full criteria and research grant application.

HHT in Children: Talking to Your School Nurse

Presented by: Leslie Perry, RN

Leslie Perry, BSN, R.N. discusses helping children manage their HHT in a social and academic environment from the perspective of a school nurse. She offers advice for providing your nurse with essential information, talking about HHT with other members of the school community, and ensuring that a child can be safe and comfortable in the classroom.

NIH Funds HHT Brain AVM Study 5 More Years

CAVMOn October 8, 2014, the National Institutes of Health (NIH) announced that it will fund research consortia to study more than 200 rare diseases.  This $29 million award will fund "Physician Scientists at 22 consortia that will collaborate with representatives of 98 patient advocacy groups to advance clinical research and investigate new treatments for patients with rare disease", according to the NIH press release. This NIH award will expand the Rare Diseases Clinical Research Network (RDCRN), which is led by NIH's National Center for Advancing Translational Sciences (NCATS).  READ the full NIH Press Release.

Cure HHT is pleased to announce that we are one of the consortia groups included in this announcement. The brain AVM study received its' initial NIH funding five years ago and according to Marianne S. Clancy, Cure HHT Executive Director, "The consortia have provided the HHT Community important information on the natural history of brain AVMs related to HHT. We are blessed to continue our partnership with our patient community to build upon the critical brain AVM research breakthroughs."

The Brain AVM study is led by Dr. Michael Lawton, Principal Invesitgator from the University of California - San Francisco and Dr. Marie Faughnan, Co-Principal Investigator and Cure HHT Scientific Research Director from the University of Toronto, St. Michael's Hospital. Cure HHT will be recruiting patients to participate in this study along with specific HHT Treatment Centers of Excellence.  LEARN more about the Brain AVM Study.

 

WE NEED PATIENT PARTICIPATION

This is an information gathering study only. If you are interested in being part of critical HHT research, please contact [email protected].

 

Cure HHT Pumpkin Carving Contest

 

CALLING ALL PUMPKIN CARVING ENTHUSIASTS ......

Let's raise HHT awareness on social media by posting Cure HHT pumpkins. We have stencils to get you started but we encourage creativity. This is your opportunity to express yourself. The voting on Facebook begins on October 28th so there's no time to waste - layout your design today and get started!

 

CONTEST

October 27, 2014 (Noon EST) - All pictures must be submitted to [email protected]

October 28, 2014 - October 30, 2014 (11:59pm EST) - Voting on Facebook

October 31, 2014 (12pm EST) - Post the winners in the following categories:

  • The first person to carve and post a picture on Facebook
  • Best pumpkin carved by a child (16 or younger)
  • Best photo
  • Most creative

 

STEPS

  • Download the stencils
    1. Original Logo
    2. Helix Only
    3. "Cure HHT" Words Only
  • Pin the stencil(s) to the pumpkin
  • With an exacto knife, start tracing and cutting out the shape
  • Take the stencil off the pumpkin and clean up the rough edges
  • Insert a votive candle
  • Spread the awareness!

 

TIPS FOR CARVING

  1. Depending on the size of your pumpkin, you may need to enlarge the stencil prior to printing it.
  2. The carving works best on thick pumpkins.
  3. Do not cut all the way through the pumpkin when carving the outline of the helix. You only want to carve completely through the strands.

 

Cerebral Abscess and PAVM

In March 2014, Danish researchers published an article in Acta Neurologica Scandinavica entitled, "Cerebral abscesses among Danish patients with hereditary haemorrhagic telangiectasia."  READ the full published article.  The results of their study revealed that:

  1. Patients with untreated pulmonary arterivenous malformations (PAVMs) have a considerable risk of sustaining cerebral (brain) abscess
  2. A cerebral abscess may be the first symptom leading to an HHT diagnosis
  3. Patients with unexplained cerebral abscess should be evaluated for HHT and PAVM

It is important for HHT patients who either have known PAVMs or don't know if they have PAVMs to use prophylactic antibiotics for any "dirty procedures" which include dental cleanings in order to minimize the risk of developing a brain abscess.

LEARN more about BRAIN ABSCESS

 

A Special Thanks

There is no doubt that the 17th National Family and Patient Conference in Santa Clara, California stood out from previous conferences.

Former HHT Board President Bob Berkman wrote, “I’ve been coming to these conferences, this is my fourth, and this is really like, a transformed environment from eight years ago when I started with the organization. So, I’m really excited about what’s happening, the changes that are taking place, and the promises we have for the future of HHT patients. These conferences all kind of build on each other, but sometimes there’s a line in the sand, and you step over and you are in a whole new place. And, this is what this year’s conference seems to be.”

Cure HHT is grateful for the individuals, organizations, and corporations who contributed to the success of our 17th National HHT Patient and Family Conference! These partnerships are essential to the strength of the HHT community. We also want to acknowledge those individuals who stood out this past year for their leadership, volunteerism, advocacy and financial support of Cure HHT.

Michael Lewis received the Robert E. Berkman Leadership Award for his outstanding leadership of the new Physician’s Directory, the rebranding of our organization, as well as his commitment with the Campaign to lead others to invest in our strategic goals involving Research, Access to Care and Awareness.

Angela Carlisle-Brown was Awarded the Trish Linke Award for her tireless work with our Foundation related to furthering the mission through her work in grassroots fundraising, increasing HHT awareness, reaching out to new families, work with the Youth program and assisting us on numerous occasions this year with donated professional services.

Jim and Michelle Lapides received the Compassionate Champion Award which recognizes individuals who have demonstrated compassion through significant actions in advocacy, fundraising, and awareness to propel our organization forward. Their expertise in strategic leadership and significant personal commitment is very inspiring.

David and Laura Rinn became Founders in providing a very generous financial contribution of $100,000. This contribution provides important funding propelling our research, access to care and awareness campaign forward.

 

Talking to Your School Nurse: Webinar

IMG_2049Tuesday, October 21

7 PM - 8 PM EST

Please join Leslie Perry, BSN, RN, for a presentation on HHT in Children: Talking to Your School Nurse.  For this next segment in our Webinar series, Nurse Perry will discuss helping children manage their HHT in a social and academic environment from the perspective of a school nurse. She offers advice for providing your nurse with essential information, talking about HHT with other members of the school community, and ensuring that a child can be safe and comfortable in the classroom.

 

LISTEN to the webinar recording.