The Agapi & Hope Gala is February 22!

Agapi & Hope Gala

We're so grateful for our Board Director Despina Viniotis Curtis for organizing and putting on the first Agapi & Hope Gala in honor of her mother who lost her battle with HHT disease last year.

This red-carpet event will take place at the Embassy Suites RTP in Cary, NC on February 22 and features a red carpet entrance, great music and dancing, live and silent actions and wonderful food--all to benefit the HHT Foundation. If you're interested in attending this one-of-a-kind event, purchase your tickets here.

Need another reason to attend? Check out these great auction items:

    • A Personal Connection with Jack "The Golden Bear" Nicklaus
      The winner will not only receive a model putter hand signed by this legendary golf champion, but will also receive a letter on Mr. Nicklaus' personal stationary addressed and signed, thanking them for their support of our Agapi & Hope Gala! These items will be presented to you in a professionally made, high-end framed shadowbox with a photo of him from the Masters as a bonus!

 

    • VIP Hollywood Access + Tickets to the ESPYs
      The winner will receive two tickets to the live 2014 ESPY Awards Show - The Greatest Night in Sports with Hollywood and sports celebrities. Also included are spectator acess the ESPY Celebrity Golf Classic, $650 airfare credit so that you can create your own travel arrangements including dates, airline and flight class and 4 Day/3 Night deluxe accommodations at 4 Star hotel within walking distance to the famed Nokia Theater in the heart of Hollywood. Winners will also be added to the guest list to another major event at an iconic location the night before the ESPYs.
    • Attendees will also have the the opportunity to bid on artwork from children with HHT in the silent auction.

If you aren't able to attend this event, but would like to contribute, we are looking for more auction items and additional artwork for the silent auction (the more Crayola, the better!). Please send any works to The Agapi & Hope Gala, 105 Redfern Drive, Cary NC 27518 address send by the first week of February.

 

The deadline to purchase tickets is February 7. Get yours today!

CDC and HHT Foundation

Did you know?

We're all aware that HHT doesn't get a lot of the attention that it deserves--especially by the government. Even so, the HHT Foundation has been in partnership with the CDC Division of Blood Disorders since 2008. Despite a lack of Congressional funding, the CDC has devoted resources to HHT initiatives including:

    • Adding HHT as a Stakeholder disorder within the Division of Blood Disorders.
    • Sponsorship of CDC Conference (2008) on HHT, leading to the HHT UNC Center of Excellence and included over 50 leaders of medical and medical specialty organizations all to increase HHT awareness.
    • Participation of Scott Grosse, PhD as a key speaker at the 20111 HHT Scientific Conference held in Antalya, Turkey
    • Creation of an administration Database project demonstrating that HHT is severly underdiagnosed and most recently published: Collaboration was with Dr. Marie Faughnan and appeared in January 2014 issue of Genetics in Medicine. Read more about the database here.
    • Participation of Marianne Clancy, HHT Foundation Executive Director, in the Annual Meeting Program committee for their National Meeting held in March 2012.  For the first time, HHT was on the program and was discussed in four specific time sessions. Dr.  Marie Faughnan was a featured speaker and Dr. Reed Pyeritz from the Pennslyvania HHT Center of Excellence was also on the program.
    • Inclusion of Dr. Scott Grosse from the CDC as an advisor on the Kaiser study grant funded by the HHT Foundation.
    • Access to HHT information by more than 270 visitors on the CDC's website -- without publicity or funding! Every visit helps to bring awareness to HHT.

The HHT Foundation is w0rking for all families affected to dramatically increase HHT awareness to the public and medical community through development of important partnerships.

 

Year of Action Part 4: Increasing Awareness About HHT

Increasing Awareness About HHT

Increasing Awareness About HHT

This year, the HHT Foundation is committed to:

  • Launching a new Awareness Campaign to increase outreach and public awareness of HHT as an un-recognized disease
  • Several awareness building, advocacy and fundraising activities are scheduled during June’s HHT Awareness Month
  • Providing HHT supporters tools to host their own fundraising event to showcase their involvement in the HHT movement
  • Utilizing Congress, press releases, outreach to print and electronic media to grow HHT education awareness to public and medical communities:
    • Official U.S. Congressional Resolution and declaration in 2009 designating June as HHT Awareness Month
    • Global HHT Awareness Day: June 23
    • Goal is to grow the message to identify individuals who are unaware that they have HHT
    • Blood Drives throughout U.S. focusing on transfusion needs and partnerships with local and regional blood banks
    • Press supplement article in Washington Post
    • Launch HHT Walk Program to increase awareness

 

We are increasing HHT education and awareness as well as improving linkages to others with the same disease

  • Sponsor Patient Conferences for adults and youth/teens in varying geographic areas, giving them access to HHT experts.  Education is key to empowering patients to become advocates for their own health care treatment decisions and enabling adults and teens to meet others who live with the same health issues and social concerns.
  • Host live Webinars on a variety topics from medical treatments to psycho-social issues to current research. All webinars are recorded and available on the HHT Foundation website. The webinars are presented by HHT experts; the information is critical for patient and physician knowledge.
  • HHT physicians are presenting lectures on HHT disease symptoms, manifestations, and treatments at a variety of medical professional association meetings as well as hospital grand rounds and medical school seminars. The HHT Foundation goal is to provide online medical education for CME credit.

The Year of Action Part 3: HHT Outcomes Registry

Building Database Graphic

HHT Outcomes Registry

The HHT Foundation recognizes the critical importance of an HHT outcomes database. To this end, the HHT Foundation has solely funded this project and enlisted the expertise at the BioInformatics Service Center (BSC) at Dartmouth's Geisel School of Medicine to develop the HHT Outcomes Registry. The purpose of this registry is to conduct natural history studies as a critical step in furthering research on HHT and to follow HHT patients on a long-term basis. Bio/Pharma companies have indicated that access to this anonymous patient data resource is a determining factor in their decision to invest financial resources in drug development for HHT.

HHT experts have been working collaboratively across North America to identify priority research questions to be answered via the HHT Outcomes Registry. These questions relate to every aspect of disease (from nasal bleeding to stroke), with emphasis on determining the outcomes (severity of symptoms, quality of life, heart failure, stroke, severe bleeding, etc. ), the personal factors that affect these outcomes (HHT genes and modifier genes, lifestyle, age, sex, etc.) as well as therapies. The answers to these questions can then to assist in targeting clinical research studies of novel new therapies. The Registry will include a module for patient entered data including HHT diagnosis, treatment, and quality of life. Patient’s will enter information on outcomes of treatment and changes in quality of life.

The Cystic Fibrosis Foundation serves as the model of success in developing novel treatments and increasing the lifespan of patients. As a result of their investment in their registry. which is considered the Gold Standard, the research produced and resulting new treatment has lead to an increased life expectancy of over 40 years!

Further, according to Michael Okun MD, Medical Director of the National Parkinson’s Foundation, “The National Parkinson Foundation launched a critical effort aimed at improving the quality of care for the Parkinson's disease patient.  Now known as the Parkinson Outcome Project, it is the largest longitudinal study of Parkinson's disease ever conducted.  Nineteen centers from around the world have participated and the project is moving into its fourth year.  The study was modeled after the successful effort engineered by the Cystic Fibrosis Foundation, and it has already yielded critical data and publications, but the best is yet to come."

By linking all North American HHT Centers, the number of patients is increased twenty times over what any single HHT Center could gather and analyze which makes the Registry a powerful research resource. The HHT Foundation will provide financial support to all participating HHT Centers in this endeavor.

Preliminary studies in animal models, as well as small clinical studies in humans with HHT, demonstrate that antiangiogenic drugs can regress faulty blood vessels in HHT;  antangiogenic drugs could lead to elimination of, or significant reduction of, chronic nosebleeds and gastrointestinal bleeding in HHT. There is evidence that one such agent, Avastin, reverses heart failure and liver failure in patients with liver vascular malformations, and is an alternative to liver transplant, though only tested in small numbers of patients to date. These agents may have a future role for shrinking brain and lung arteriovenous malformations. Studies need to be conducted to determine which HHT patients, and which aspects of HHT, will have a clinically important response to antiangiogenic therapy. In addition, optimal dosing needs and any side effects to be determined for HHT patients. Detailed clinical and genetic information about HHT patients will be collected in the HHT Outcomes Registry. This will allow appropriate selection of patients for these types of trials, as well as design of the specific trials according to measured determinants and improved treatment outcomes.

 

The Year of Action Part 2: Advancing Treatment

Year of Action Advancing Treatment

Advancing Treatment

This year, the HHT Foundation is committed to developing relationships with Bio/Pharma Companies to either accelerate drug discovery efforts for HHT or repurposing their existing FDA approved drug therapies.  Our goal is to develop and study new antiangiogenic therapy for HHT (reverse blood vessel growth). Through collaborations with Bio/Pharma companies, novel therapies are already under evaluation for proof of concept studies.

The HHT Foundation is looking for a long-term solution to improving the quality of life for HHT patients who suffer from moderate to severe nosebleeds.  In 2014, the HHT Foundation will be announcing the results of its first sponsored Phase II Clinical Trial, North American Study of Epistaxis (NOSE Study), where three nasal spray agents and a placebo were tested on 120 HHT patients at six North American HHT Centers.

The Year of Action Part 1: Increasing Access to Expert HHT Care

Increasing Access to HHT Expert Care

Increasing Access to Expert HHT Care

Increasing HHT Centers of Excellence throughout North America, including new Centers at:

  • University of California San Francisco  (application in process)
  • Several other medical institutions have expressed and interest in filing an application

The HHT Foundation has established quality standards for the new HHT Center physicians to demonstrate necessary experience, added a mentorship program where proposed new Centers visit existing Centers and continue as their mentors.  The HHT Foundation ensures on-site evaluation with the full team and facilities as part of the HHT Center certification.

Launching a Physician Registry

The HHT Foundation is creating a searchable database of physicians that will appear on hht.org website including their experience in caring for HHT patients.  The Physician registry will give patients a list of doctors in their geographical area. The registry will include:

    • Medical professionals from current HHT Centers
    • Specialists recommended by current HHT Center physicians
    • Physicians recommended by HHT patients

The database will include the name, specialty, contact info, training history and procedural expertise. It will also include HHT research participation and experience

2014 is the Year of Action

Happy New Year!

Welcome to 2014 and to what we are calling “A Year of Action” for HHT disease.

Our medical experts tell us that we have never been closer to making disease-modifying progress in the fight against HHT disease.  We know a cure is possible in our lifetime.  We also know that too many people are exhibiting the signs and symptoms of HHT but yet are undiagnosed.  And we know that the more consistent quality of care for those who are diagnosed must be available for persons with HHT disease.

This year, the HHT Foundation International is taking bold steps. There has never been a more urgent time for you to stand with us as we aim to transform HHT disease.

Donate Now! Increasing Awareness About HHT Building Outcomes Database Advancing Treatment Increasing Access to Expert HHT Care

New Webinar Recording Available–Managing Chronic Nosebleeds: Current Treatments and Cutting-Edge Therapies

Watch the recording of the January 6th webinar, Managing Chronic Nosebleeds: Current Treatments and Cutting-Edge Therapies, presented by Dr. James Gossage and Dr. Alan Whitehouse. The presentation is followed by a Q&A session with attendees.

Our next webinar, Iron Deficiency and Anemia in HHT, is on February 11th presented by Dr. Raj Kasthuri.  Register today.

Registration is now open for February Webinar: Iron Deficiency and Anemia in HHT

Dr. Raj KasthuriOur next webinar, Iron Deficiency and Anemia in HHT, is on February 11th presented by Dr. Raj Kasthuri. Dr. Kasthuri will discuss the manifestations of iron deficiency and anemia, how the diagnosis of iron deficiency is made and the different approaches to treat iron deficiency anemia including oral and intravenous iron replacement strategies. After the presentation, Dr. Kasthuri  will be available for questions and a discussion.

Register today.

 

Managing Chronic Nosebleeds: Current Treatments and Cutting-Edge Therapies

Presented by: Dr. James Gossage and Dr. Alan Whitehouse