St. Louis, Missouri

October 22-24^th 2010

You are invited to the latest installment of the inspirational and educational National HHT Patient and Family Conference.  This conference commemorates the 20^th anniversary of the HHT Foundation and will have something for everyone…

The Program Committee has compiled an outstanding roster of speakers from around the continent to cover an ambitious list of topics: genetics of HHT, organ-specific management, psychological impact of HHT, anti-angiogenic therapies, and much more.

To learn more details of download the entire conference brochure click here.

This conference is also spotlighting a new Youth Track and “Advanced” workshop topics geared especially for returning participants, in addition to a unique opportunity to enroll in the NIH-funded Brain AVM research registry.

October is a wonderful time to visit St. Louis.  The weather is fabulous. The foliage is spectacular. And baseball fever is in the air!  The area has much to offer families, including a world-renown zoo, the Gateway Arch, glorious Forest Park, the Missouri Botanical Gardens, and so much more.

So bring the whole family and meet us in St. Louis!!

DATE: Friday, October 22, 2010

TIME: 8:30 am - 7:00 pm

LOCATION: Eric P. Newman Education Center (EPNEC)

320 S. Euclid Avenue St. Louis, MO 63110

DATE: Saturday, October 23, 2010

TIME: 7:00 am - 10:00 pm

LOCATION: Eric P. Newman Education Center (EPNEC)

320 S. Euclid Avenue St. Louis, MO 63110

DATE: Sunday, October 23, 2010

TIME: 7:00 am - 1:00 pm

LOCATION:  Eric P. Newman Education Center (EPNEC)

320 S. Euclid Avenue St. Louis, MO 63110

For a detailed schedule of the conference program click here.

COST: For only $250 per person (HHT Foundation member price before September 3^rd, after September 3^rd price is $275 per person) you can interact with the experts and get the latest information on HHT research, manifestations, and treatments. Youth registration cost is $50/youth (ages 6-16).

PROGRAM DETAILS: This conference will cover a wide variety of topics, including HHT Diagnosis, Treatment, and Management in Children and Adults, Management of Anemia, Medical Treatment and Management of Nosebleeds in Adults and Children, Nosebleed Home Remedies, Genetic Advances in HHT, Exciting Research Advances and Opportunities for Your Participation, Medical Insurance Issues and new this conference a Youth Track program specially designed for children and teens, in addition to much more...

For a complete overview of the conference program and registration, click on the documents below.

• Conference Program
• Conference Flyer
• Conference Registration Form ADULT
• Conference Registration Form YOUTH
• Online Conference Registration Form ADULT
• Online Conference Registration Form YOUTH

PARENTS OF CHILDREN WITH HHT

• To participate in the Youth Program, you must complete a separate registration form for each child.
• There is an IRS ruling that permits parents to deduct “expenses of admission and transportation to a medical conference relating to the chronic disease of the individual’s dependent”. (See IRS Bulletin No. 2000-19, May 8, 2000)

BRAIN AVM STUDY: The HHT Foundation will begin the Brain AVM research recruitment at this conference. To participate in this study, you must be diagnosed with a brain AVM, regardless of whether or not the brain AVM is treated or untreated. All participants in this research study will be scheduled for a one-half hour consultation on October 22^nd, 23^rd, 0r 24^th with a nurse and a physician before, during, or after the conference sessions.

To learn more about this study or to register for a consultation appointment on October 1^st , click on the document below.

• Brain AVM Study Registration Form

HOTELS: We have made arrangements at an area hotel. We have received a conference rate for the event at $103/night (up to 4 people).  This special rate is available only for reservations made on or before September 3, 2010.  Reserve your room now!

Parkway Hotel

4550 Forest Park Avenue

St. Louis, MO 63108

www.theparkwayhotel.com

Reservations: 314-256-7777 or online  click here

Special features of the hotel:

• Free high speed internet access in every guestroom (Ethernet)
• Free Wi-Fi in hotel lobby
• Free shuttle within a 5 mile radius (6am-10pm)
• Microwave, refrigerator and coffeemaker in every guestroom
• Exercise room
• Covered parking for $5/day which includes twenty-four (24) hour in and out privileges.
• Room rate is valid through September 3, 2010

GALA, LIVE AUCTION, AND RAFFLE: The HHT Foundation will be having a Gala Dinner and Live Auction on Saturday October, 23^rd from6: 30-10:oo.  You can support the HHT Foundation, whether or not you are attending the conference you can still participate in supporting by purchasing raffle tickets.  Grand Prize is an Apple IPad!

• Gala and Live Auction detailed information
• Raffle form

CORPORATE SPONSORS:  The National Patient and Family conferences are an invigorating opportunity to educate patients and families about the latest treatment and management of HHT in an environment with other patients and families facing the same challenges, including presentations and interaction with the leading physicians and experts throughout North America.  Our Corporate sponsors, exhibitors and advertisers help make it possible to stage these important and costly conferences.

• Exhibit & Sponsorship Prospectus
• Corporate Sponsorship Form

REGISTER NOW!

]]> http://hht.org/2010/08/the-fifteenth-hht-foundation-international-patient-and-family-conference-in-st-louis-october-22-24-2010/feed/ 0 http://hht.org/2010/07/ucla-named-the-10th-us-hht-center-of-excellence/ http://hht.org/2010/07/ucla-named-the-10th-us-hht-center-of-excellence/#comments Wed, 14 Jul 2010 02:46:10 +0000 christine.auro http://hht.org/?p=2046 The HHT Foundation is excited to announce that after a lengthy application and approval process, the HHT Foundation has named UNIVERSITY OF CALIFORNIA at LOS ANGELES HHT CENTER (UCLA) the 10th US HHT Center of Excellence.

The HHT Board of Directors has made increasing access to HHT professionals a priority.   By increasing the number of HHT Centers of Excellence, diagnosis and treatment of HHT will be more affordable by decreasing travel costs and increasing the likelihood of insurance coverage.

In 2008, the Foundation established a committee, led by Marianne Clancy, Executive Director, and Dr. James Gossage, Medical Director, to develop a process to evaluate the medical expertise and viability of an HHT Center.   Although the HHT Foundation and the HHT Centers of Excellence are completely separate entities, we work in a collaborative effort to advance the diagnosis, treatment, and management of HHT. University of California, Los Angeles (UCLA), is a world-renowned institution that has been coordinating care  and treatment of HHT patients for decades.

Now, Dr. Justin McWilliams and Dr. Gary Duckwiler are Co-Directors of the new HHT Center and they have organized a team of specialists who are knowledgeable in the care and treatment of HHT. We at the HHT Foundation are really excited about this new collaboration!

Click Here to download the brochure with details on the new UCLS HHT Center of Excellance.

Click Here to learn more about our other HHT Centers of Excellence.

We now need to concentrate our efforts on the House of Representativesin hope for a similar victory!  It too has been introduced with a Resolution for June to be National HHT Awareness Month in 2010.

The following is a sample script of what one might say when reaching out:

Call Ann Jablon from Rep. Richard Neal's office at 202-225-5601 or email at ann.jablon@mail.house.gov

Create awareness in another way by participating

in the National June Awareness Cash Raffle.

Details click here.

Recruitment for the Brain AVM Study to occur at the upcoming St. Louis Conference on October 22-24, 2010

In November 2009, the National Institutes of Health awarded the Brain Vascular Malformation Consortium funding to study Brain AVM's in three diseases, HHT being one of them.

The goal of this Brain AVM Study is to determine what genetic and clinical factors signal high risk for hemorrhage from brain AVM's. For HHT patients this means that the study will determine the RISK of cerebral hemorrhage from brain AVM's, which FACTORS impact the risk of hemorrhage, and ultimately help doctors make decisions about Brain AVM TREATMENTS.

JOIN US IN St. Louis, Mo on October 22nd-24th for the HHT National Conference and be one of the first HHT patients to PARTICIPATE in this study. Contact the office with any questions at 410-357-9932.   To learn more about the upcoming October conference please look for details on our conference website- click here.  Please note that details are still to come.

Click here to view the Goverment Certified Document with full details on the passed S.Res. 508. 

We at the HHT Foundation thank both Senators Johnson and Bennett for their support of the June Awareness Month Resolution.  We also thank those individuals that worked hard in contacting their Senators to gain co-sponsors on the vote.

It is of utmost importance for our House members to cosponsor H. Res. 536. act now  in joining in and helping the HHT Foundation obtain all the co-sponsors for the H. Res. 536.  We currently have 19 of the 50 co-sponsors needed.  We need to act now as they will be in session to vote soon!

Click here for more details on how you can help create awareness by getting co-sponsors for H. Res. 536.

Create awareness in another way by participating

in the National June Awareness Cash Raffle.

Details click here.

HHT Foundation

Now Offers HHT MedicTags

MedicTag is a digital USB personal medical alert and information device that combines your emergency information with today's technology.  A digital memory chip is used to store all your information on the easy to use MedicTag medical history and alert form.

MedicTag can tell them when you can't.

Each MedicTag features the universal medical alert symbol that first responders are trained to look for on the front of the tag.  The back contains the words HHT Foundation International and the words "Osler-Weber-Rendu Syndrome" along with the HHT Foundation's website.  Any emergency service, ambulance, police or rescue squad with a laptop computer can have instant access to all your emergency information.  Note:  Some hospital emergency rooms may not accept personal USB (Flashdrives).  In this case you can print out the MedicTag information form and take it with you.

Convenient and easy to carry on a key ring.

MedicTag is convenient and easy to carry on a key ring, lanyard or belt loop.  Keep it with you at all times.  FEMA and the Red Cross both recommend that your emergency information, including medications and emergency contacts, be part of your disaster preparation kit. In case of an emergency evacuation due to hurricane or flood that information is much more likely to be available if you have it on your key ring.

You don't need to be a computer expert to use it.

Simply plug it into the USB port on your computer to start the program, there is nothing to install, it's all on the MedicTag. Fill in the blanks with as much, or as little information as you need, click on "save" and you are done.  You can even upload digital X-rays, MRI, and CT scans.   It is compatible with most home and office computers and requires only Windows and MS Word to fill out the information form.

For more information see the following:

• MedicTag Overview
• Instructions for Use
• FAQs
• Demo

We are committed to helping our members manage their HHT.  As an added incentive, we are offering the HHT MedicTags to our members at a special discounted price of $34.99.  A portion of your purchase will support the HHT Foundation.

• HHT Member Price $34.99
• Non-Member Price $44.99

ORDER NOW

If you would like to become a member of the HHT Foundation, please click here.  If you have any questions about the HHT MedicTag, please do not hesitate to contact us at 800-448-6389.

Dr. Hoag conducted this research through an HHT Foundation grant award and presented an abstract outlining the results of his study at the 8th HHT International Scientific Conference

The drug thalidomide, most commonly known for its use in the treatment of morning sickness which had lead to birth defects (c. 1960's), has proved to be a success in the treatment of nosebleeds.  According to the findings from this study, taking the drug lessened the stregnth of nosebleeds and reduced the occurrences of nosebleeds in many of the participating patients.  The research has concluded and the results have just now been published. 

Please read the full article published in Nature Medicine, a premier biomedical research journal.   Click here download the article.

You can also view recent media coverage on the research study on the following news websites:

MSNBC's Health website- Click here

TOP NEWS website- Click here

CALGARY HERALD website- Click Here

MEDICAL NEWS website- Click Here

There is a lot of “buzz” about Avastin in the HHT community during the past year or two.  Avastin is the trade name for bevacizumab.   Bevacizumab is an antibody that can attach to a protein called vascular endothelial growth factor (VEGF).  VEGF is involved in the growth of both normal and abnormal blood vessels throughout the body and is increased in the blood of patients with HHT.  Some people believe that increased levels of VEGF in the blood of HHT patients may be responsible for the development of telangiectasias and arteriovenous malformations (AVM), but this has not yet been proven.  When bevacizumab attaches to VEGF, it blocks the actions of VEGF and theoretically decreases blood vessel growth.   Interestingly, Bevacizumab was developed to treat cancer by decreasing the blood supply to growing tumors.  It has been effective in the treatment of several cancers when given as an intravenous infusion.  During the last several years it has also been shown to be effective in the treatment of certain non-cancerous diseases of the eyes when given as an injection into the eye.

There are so far only a few published reports on the use of bevacizumab in the treatment of HHT.  The first report was published in 2006 by Flieger (pub med link 1).  This report described a patient with HHT and intestinal bleeding who was treated with bevacizumab for a malignant tumor.  Treatment with bevacizumab stabilized his cancer and also markedly improved his anemia and reduced his need for blood transfusion.  In 2008, Mitchell and colleagues reported a HHT patient who had improvement in heart failure due to liver AVM after treatment with bevacizumab (pub med link 2). The  most extensive study of bevacizumab in HHT came from the HHT Center in San Diego by Dr. Simonds and Davidson (pub med link 3).  In this report, 10 patients with HHT related nosebleeds received injection of low dose bevacizumab underneath the delicate tissue inside the nose along with laser treatment.  When compared to other patients from the past who had received only laser treatments by the same surgeon (Dr. Terry Davidson), the patients who received bevacizumab + laser showed a modest improvement in frequency of nosebleeds, need for blood transfusions, and quality of life.    The most recent study reported on an impressive improvement in nosebleeds after the use of a low dose bevacizumab nose spray in a single HHT patient (pub med link 4).  Nosebleeds almost completely stopped after a 1-2 week course of bevacizumab.  Although the nosebleeds typically returned after 3-6 months, repeat courses of bevacizumab were effective.  There have also been sporadic reports by word of mouth about a patient here or there who received intravenous bevacizumab for various complications of HHT (including intestinal bleeding) and had improvement, but most of these have not been published in scientific journals yet.

These reports are very encouraging and have stimulated much interest amongst patients and doctors.  However, these reports are only early steps in the process of evaluating the role of this powerful medication in the treatment of HHT.  Most importantly, none of these studies included a group of patients who received a placebo treatment (“placebo-controlled”), so it is not possible to say that bevacizumab was proven to be effective and safe.  In general, most physicians believe that only a placebo-controlled study can prove a treatment’s effectiveness and safety.  There have been many studies in the medical literature that showed promise in early stages, but were later proven ineffective when larger placebo-controlled studies were done. 

Bevacizumab has also been associated with a number of side effects, but mainly during intravenous infusion of higher doses.  In the cancer studies, bevacizumab had more serious side effects including life threatening hemorrhage, strokes, hypertension, and protein in the urine.  However, the patients in the cancer studies received repeated intravenous infusions of moderately higher doses compared with single nasal injections in Dr. Simond’s study.  In Dr. Simond’s study, 40% of the patients who received bevacizumab injections developed a hole in the membrane that separates the nasal passages.  The authors have since modified their treatment and there have been no significant complications in the last 30 or 40 patients. Furthermore, patients who received low doses in the eye studies had very few side effects.

Because of potentially serious side effects and some uncertainty as to its benefit, most HHT physicians currently recommend against the routine use of bevacizumab - rather, we believe it should be reserved for use in well controlled research studies or for patients who have failed more conventional therapies.

The HHT Foundation is very interested in promoting research on the use of bevacizumab in patients with HHT.  The HHT North American Therapeutics Group is currently designing a multicentered study of various treatments for HHT related nosebleeds.  This will be a carefully designed study that will include a placebo group and will attempt to determine the effectiveness and safety of several different treatments for nosebleeds.  Bevacizumab is one of the agents being considered for this study.  It is hoped that this study will start enrolling patients in June 2010.  This study will require a significant investment of money and effort by patients, clinicians, and the HHT Foundation.  If you are interested in making a donation toward this very important research study, please click here.  If you are interested in participating in this or other HHT research, please see the list of active HHT research by clicking here.

James R Gossage

Medical Director, HHT Foundation

Information.   Support.   Educate.

 ARISE to the Benefits of Membership!

The circle of awareness through education, information and research encourages the Foundation and its members to support each other in a common goal to cure HHT.

Members of the HHT Foundation are …

…the kind of people who visit the Foundation website for information...and take the step to JOIN.   

… Pro-active in their family, EDUCATING all whom might have a life threatening condition and make them AWARE of manageable treatment options and the latest RESEARCH. 

… People who receive information and referral SUPPORT from the HHT Foundation and in turn, SUPPORT the HHT Foundation.

… the Physicians who treat HHT and the Scientists who research HHT, such as the Center Directors and the Global Research and Medical Board all maintain memberships.

This is an exciting time to be to be a part of the HHT Foundation!

NOTICE: As of April 2010, the HHT Foundation will re-institute a few member only services.   

In 2010, MEMBERS can look forward to:

• HHT Monthly News Bulletins now sent just to members.
• A 3 part series in Direct Connection member- newsletter titled, “Clinical Guidelines:  What the Clinical Guidelines Mean to You and your Doctor.”  Each issue will focus on different organs affected by HHT.
• A short survey that will ask how you are personally affected by HHT and the Centers of Excellence that you have visited.   We need to know the needs of our members and the personal impact of HHT on each and every one of you.  When asked by research institutions questions such as,   “What percentage of your members have severe epistaxis?” or “How many do you know of in your data base have liver involvement?” The HHT Foundation will have answers representing our constituency.  Research can be impacted by your response!

 Become a member today!