NATTThe National Alliance forThrombosis and ThrombophiliaThrombosis and ThrombophiliaThrombosis and Thrombophilia Thrombosis and Thrombophilia

www.nattinfo.org

Spring 2006

A W A R E N E S S • P R E V E N T I O N • T R E A T M E N T • S U P P O R T

NATT

AFTER THE CLOT: POSTTHROMBOTIC SYNDROME

A blood clot is often a life changing experience, creating anxiety and concern, as well as long lasting physical complications. Because many of us at NATT have experienced blood clots, we are focusing this Newsletter on the problems that occur after a blood clot.

Postthrombotic syndrome is a term used to describe the various chronic symptoms that may develop in the legs and arms after a blood clot forms in a vein, or after the valves in a vein are damaged. Symptoms may include pain, swelling, discoloration, and ulcers. Postthrombotic syndrome affects more than 300,000 people in the United States. [reference Heit J et al., Blood 2005,vol 106, suppl; abstract 910].

Quite often, health care providers fail to provide patients with information on how to prevent, or reduce postthrombotic syndrome. The symptoms can be treated by several methods, for example, custom fi tted compression stockings, the use of compression pumps, and Unna boots for skin ulcers. There are also surgery options to improve blood fl ow through a damaged vein, such as balloon dilatation and inserting stents to open up the vein.

Suffering could be decreased, or eliminated, with the appropriate measures. This Newsletter has medical information on prevention and treatment options for postthrombotic syndrome and a personal story from a person with postthrombotic syndrome. We hope this information empowers you to seek the support and treatment necessary to improve your quality of life after a clotting experience.

Mark Jablonski, President

A CALL TO ACTIONon Blood Clots!

Tuesday, May 9, 2006, will forever mark a turning point in the battle against blood clots (DVT, PE*). On this day the Surgeon General of the United States, Vice Admiral Dr. Richard H. Carmona, speaking at the conclusion of a 2-day workshop on DVT and PE involving 70 leading researchers, clinicians, public health administrators, and the National Alliance for Thrombosis and Thrombophilia, committed to issue a Surgeon General’s CALL TO ACTION to prevent and decrease the tremendous negative impact of DVT and PE on the American public. The CALL TO ACTION is expected to be issued sometime this summer.

NATT was privileged to participate as the leading patient advocate and full partner at the workshop conducted at the National Institutes for Health (NIH) in Bethesda, Maryland. The workshop was convened by the Surgeon General’s offi ce and the NIH (through its National Heart, Lung, and Blood Institute) to bring together the leading minds (including fi ve members of NATT’s Medical and Scientifi c Advisory Board) in research, prevention, diagnosis, treatment, and advocacy for blood clots to discuss and identify the priorities that must be addressed to decrease the deaths (300,000 fatalities) and debilitation (over 900,000 patients develop blood clots) each year.

Continued on page 7

From left to right: Dr. Robert McLafferty (Southern Illinois University), Mike Hefron (NATT; patient), Surgeon General Vice Admiral Richard H. Carmona, M.D., Mark Jablonski (NATT), Sheryl J. Benjamin (Vascular Disease Foundation), Dr. Stephan Moll (NATT), Deputy Surgeon General Admiral Kenneth Moritsugu, M.D.

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Venous Stress DisorderPain, Swelling and Other Chronic Symptoms after a Blood ClotDr. Stephan Moll, Chapel Hill, North Carolina, and Dr. Susan R. Kahn, Montreal, Canada

What is it?

A number of chronic symptoms may develop in the legs and arms after a blood clot forms in a vein, or after the valves in a vein are damaged. The symptoms and fi ndings include pain, swelling, discoloration, and ulcers. These problems are common after a deep vein thrombosis (DVT), the medical term for the formation of a blood clot in the deep veins of the legs or arms.

Normally, blood from the legs and arms moves through our veins in one direction. Small valves in the veins keep the blood fl owing correctly. Problems occur if the valves are damaged, or if the veins are obstructed with clots or scar tissue. As a result of these problems, the leg or arm may become swollen and painful.

Several different terms are used to label the chronic symptoms, but they all describe the same problem:

Venous stasis syndromePostthrombotic syndromeVenous insuffi ciency syndromePostphlebitic syndrome

For the purpose of this article, the symptoms will be referred to as “venous stress disorder,” a term that includes a variety of problems related to the veins.

Not everybody who has the symptoms of venous stress disorder has experienced a blood clot. The same symptoms may occur in patients with heart failure, obesity, dysfunction of the valves in the vein, and other causes that are not clearly identifi able.

What are the symptoms?

While some people who have had a DVT recover completely, others may have chronic arm and leg symptoms (Table 1). Sometimes, the problems can be severe enough to cause disability. Symptoms are typically worse by the end of the day. The symptoms are less in the morning, or after resting the legs or arms in an upward position. Dark pigmentation may occur, but this does not cause symptoms or damage the skin. A patient with chronic extremity swelling may develop hardened, dry, and scaly skin. Skin breakdown can occur and an ulcer may form.

Who develops it?

Typically, a more extensive DVT will result in a more severe case of venous stress disorder. However, this is not always so: even patients who have had extensive DVTs may recover completely and have no chronic symptoms. The symptoms of venous stress disorder usually occur within the fi rst six months after a clot, but can occur up to two years after the incident. If a patient has done well for six months to two years after the clotting event, it is unlikely that he or she will develop venous stress disorder.

How do you prevent and treat it?

Prevention is the key issue. If a patient has leg swelling after an acute DVT, compression stockings should be worn to decrease the swelling. They should be properly sized by measuring the patient’s leg circumference. They need to have a certain compression pressure at different parts of the leg, which is referred to as gradient compression. The range of compression should be 30-40mmHg. The stocking should cover the entire part of the leg that has swelling. Stockings should be worn during the day, but are not needed at night. Further research on the benefi t of compression stockings and the prevention of the venous stress disorder is ongoing. Sleeves or “gauntlets” are worn for swelling or pain in the arm.

Stockings come in a variety of colors, shapes, sizes and materials, and from a variety of companies. It is worthwhile for the patient to make inquiries to fi nd the right stocking that fi ts correctly, is relatively comfortable, and has an acceptable appearance.

“Anti Embolism Stockings” or “TED hose” are used for hospitalized patients to prevent blood clots in the legs. However, they only put mild pressure on the legs and are not useful to prevent, or treat, venous stress disorder.

Posthrombotic pigmentation

Healed skin ulcer andpostthrombotic pigmentation

Chronic leg swelling, skin hardening, and postthrombotic pigmentation (shown on right).

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PRESIDENTMark Jablonski, Illinois

VICE PRESIDENTLori Preston, Maryland

TREASURERKathy Earley, North Carolina

SECRETARYThomas Hogan, Connecticut

Randolph Fenninger, Virginia

Pat Koppa, Minnesota

Lynn Levitt, Colorado

Ed Stransenback, New York

Elizabeth Varga, Ohio

PUBLIC HEALTH AND NON-PROFIT SUPPORT

Val Bias, CEOCompass Nonprofi t Consulting Service

Sara Critchley, RN, MS

Sally Crudder, Division of Hereditary Blood DisordersCenters for Disease Control and Prevention

Joe Webber, JDActing Executive Director, NATT

MEDICAL AND SCIENTIFICADVISORY BOARD

CHAIRStephan Moll, MDUniversity of North CarolinaChapel Hill, North Carolina

Jack Ansell, MDBoston University Medical CenterBoston, Massachusett

Kenneth Bauer, MDHarvard Medical SchoolBoston, Massachusett

Bruce Evatt, MDCenters for Disease Control and Prevention Atlanta, Georgia

John Heit, MDMayo ClinicRochester, Minnesota

Edward Libby, MDUNM School of MedicineAlbuquerque, New Mexico

Marilyn J. Manco-Johnson, MDUniv. Colorado Health Sciences Ctr.Aurora, Colorado

Kenneth Mann, PhDUniversity of VermontBurlington, Vermont

Elizabeth Varga, MSOhio State UniversityColumbus, Ohio

NATTBOARD OF DIRECTORS

While resting, elevating the arm or leg above the level of the heart is also helpful to decrease swelling. Maintaining the correct body weight may also improve the symptoms, as may regular exercise. In cases of pronounced swelling that does not improve with compression stockings, a compression pump can be tried. Such pumps can lead to signifi cant relief and are often not considered by physicians. Pain management is important and needs to be individualized. It can be diffi cult to control pain and a consultation at a specialized Pain Clinic may be necessary.

Some patients have a narrowing of a vein in the pelvic area. This can be due to a congenital narrowing (May-Thurner

Table 2: Treatment of Venous Stress Disorder*

Elevation of the arm or leg when at rest and at night

Compression stockings, grade 2 (30 to 40 mm Hg)Jobst - www.jobst.comJuzo - www.juzo.comMedi USA - www.mediusa.comSigvaris - www.sigvaris.com Venosan - www.venosan.com

Weight loss

Increased exercise with strengthening of extremity muscles (not studied yet whether this is truly benefi cial)

Pain management

Compression pumpBio Compression - www.biocompression.comMego Afek - www.lympha-press.com.

Vascular interventional radiology procedure:Balloon opening or widening of narrowed veinStenting of narrowed vein

* NATT does not endorse specifi c medical products. Other products may also be available.

syndrome) or to scarring of the blood vessel from a healed blood clot. If a narrowing is present, it may be helpful to undergo a vascular radiology procedure to balloon open and insert a stent into the narrowed vein. Symptoms may dramatically improve.

Skin ulcers that result from venous stress disorder may be diffi cult to heal. A visit with a vein or wound care specialist is recommended. Short stretch bandages, Unna boots, or foam dressings, often lead to wound healing, although this is a slow process.

A summary of treatment options and information on the products mentioned above, is found in Table 2.

Table 1: Symptoms and Physical Signs of Venous Stress Disorder

chronic or intermittent painchronic leg swellingunspecifi c discomfort and general aching of the leg or armleg heaviness, tiredness, and crampingvaricose veinsdark skin pigmentationbluish discoloration of the leg and foot, or arm and handskin ulcer, eczema, and skin drynesshardening of the skin

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Velton Wainwright Tudor’s Story

In October of 1993, when I was 47, my left leg started swelling from my hip to my toes and I started experiencing trouble breathing. My leg felt so tight, that I couldn’t

bend my knee, so I contacted an orthopedic practice who then referred me to an internal medicine physician, Dr. D.

Dr. D. gave me a Doppler test which showed that I had numerous blood clots in my left leg; fi ve from knee to ankle and fi ve from knee to hip. The diagnosis was severe deep vein thrombosis (DVT). I was, frankly, frightened as he told me about this, especially since he thought a clot might have gone into my lung, which would explain why I was having trouble breathing.

I was admitted to the hospital, where I stayed seven days on a heparin drip to stop the blood clots. I was told that my leg might need to be amputated, one day, due to the severity of the condition. I was released from the hospital, but it turned out that the treatment did not work, because I immediately started having problems. The next day, when I was at home, I became very sick. My leg became swollen and turned almost black, especially around my foot.

I went back into the hospital and they immediately put an IV in the big toe of my left foot and I was given a drug called Streptokinase, which breaks up blood clots. I was given this clot busting drug for fi ve days. The Streptokinase was extremely costly, one vial was about $3,000, resulting in a total hospital bill of $102,000. Worse than the cost was the fact that this treatment failed, as well.

At this point, Dr. D. recommended that I use a sequential compression pump. This machine is used with a sleeve that wraps around the leg, and forces the blood to circulate through the leg. I started using this equipment right away. After using the pump, I have to put lotion on my skin to keep it from drying out. In addition to the pump, Dr. D. prescribed one baby aspirin and Coumadin, taken daily. I was instructed to wear a compression stocking all day and to sleep with my leg elevated. I was told to exercise by walking and doing water aerobics fi ve times a week. Once a month, I have a blood test to check that the Coumadin has made my blood thin enough so that I don’t get new clots. Adhering to this treatment really helped to keep the swelling down in my leg. I was feeling much better.

Over the next few years, using the pump became a way of life for me. I was determined that my medical problems wouldn’t stop me from traveling and doing what I wanted to do. For example, in 1998, I took a 12 day trip to England, Paris, Sweden, and Rome. There, in my luggage, was my faithful pump along with an international electrical converter. But,

to my dismay, the converter was not compatible with the pump and the pump burned up the fi rst day in England! So, without the use of the machine, I managed by laying fl at on the fl oor for about an hour each night, with my legs and feet up against the wall, so that I could “milk” the swelling out with my hands. I slept with my feet elevated, continued wearing the compression hose, and had a great vacation. When I returned back home, I got a new pump.

For all these years, I had no medical explanation for the blood clots. I still wanted to know what was causing them. So, in 1999, I decided to call the Hematology department at our state university. Dr. W. answered the phone and I told him about my condition. I had an appointment with him and he ordered blood work. The tests showed that I have a defective gene called factor V Leiden. He advised me to continue taking the Coumadin. My family was tested and my brother and daughter both tested positive for this condition.

In 2001, I had a few ulcers in my left leg. I saw Dr. D., and he told me that the valves in my legs had collapsed which resulted in no blood return from the legs, and that there was no cure for this. He prescribed an Unna boot, which was changed every 10 days. This device is like a soft cast from ankle to knee that delivers medicine to the leg. I had to have total bed rest for three months. To reduce swelling, I still used the pump, which was put on over the boot at night.

In 2002, my right leg started to swell. I did not seek medical attention, but I began using the pump on this leg one hour a night, as well. Finally, in 2005, I made an appointment with a new doctor, Dr. S. He ordered an MRI, and it showed old blood clots in my stomach and, most importantly, that there was a 90% blockage of the vena cava (the main vein in the abdomen that drains both legs).

Dr. S. recommended surgery, although the risk was high. The surgery, vena cava stenting, would involve placing stents, which are tiny mesh tubes, in the veins to hold them open. There was only a 50% chance of success with the operation. The morning of the operation, the surgeon told us in the family conference, that the likelihood of success was only about 20%. As frightening as this news was, I still felt that 20% was better than nothing. My brother was there with me, and supported me in this decision. In the vena cava, one six-inch stent was inserted and two more stents were placed in the same vein. My left leg received two stents and my right leg had one stent inserted. Well, the operation was a success! The swelling went down about 30% in my left leg, and some color has come back. For the fi rst time in 13 years, I am able to walk on a treadmill and am presently doing one mile and working

continued on page 6

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At present, warfarin (coumadin®) is the only oral blood thinner (anticoagulant) available in the U.S. that is approved by the Federal Drug Agency (FDA). As many patients know, warfarin therapy can be quite inconvenient, since (a) regular monitoring of its blood thinning effect is needed (via the protime or INR–International Normalized Ratio), (b) it can be diffi cult to fi nd the right warfarin dose for an individual patient, (c) INRs may fl uctuate, (d) vitamin K in the diet can infl uence the INR, and (e) many other drugs interact with warfarin and increase or decrease the INR.

Several new oral blood thinners that do not require monitoring of their blood thinning effect are in development. If they come onto the market, they will make life much easier for patients who require long-term blood thinning medication. Exanta® (Ximelagatran; by Astra-Zeneca) was the drug furthest along in clinical development. However, in October 2004 the FDA decided not to approve Exanta®

(see NATT spring 2005 newsletter). Although Exanta® was approved for short-term use in Europe, the drug was withdrawn from the world market in February 2006 because of potential liver problems that could be fatal. Astra-Zeneca is now focusing on the development of a newer blood thinner, that is presently being tested in clinical trials (table).

The race continues among several pharmaceutical companies to be the fi rst to get a new oral blood thinner clinically tested, approved, and onto the market. Several drugs are presently being studied in human trials. It is too early to speculate or conclude, how good these drugs are, which ones might eventually lead to FDA approval, and which one might be the fi rst on the market. The new blood thinners are divided into two classes, depending on their blood thinning mechanism. One class of drugs blocks the clotting protein thrombin (also called “factor IIa”) and the drugs are, therefore, called anti-thrombins or anti-IIa drugs. The other class of drugs blocks the clotting protein factor Xa and the drugs are, therefore, called Xa-inhibitors or anti-Xa drugs. There is no scientifi c reason why one class should be safer or more effective than the other. Clinical trials will determine whether there is a difference between them and which one is the best (most effective and safest).

Drugs in development have to go through rigorous and extensive clinical trials before they can receive FDA approval and come onto the market. Clinical trials are divided into 4 phases:

Phase 1: safety trial, often in healthy volunteers.

Phase 2: dose-fi nding trial, in which

several different investigational drug doses (typically around 4 doses) are compared with a well established drug. In the case of oral blood thinners, the control is warfarin.

Phase 3: large trial usually involving thousands of patients; the investigational drug is compared with established treatment. In phase 3 trials, only one dose of study drug is tested–the one that has been determined to be optimal in the phase 2 trials. The results of the phase 3 trials, if favorable, lead to FDA application for approval of the drug.

Phase 4: These trials are done after the drug has been FDA approved. The purpose is to collect additional information on a drug’s risks, benefi ts, and optimal use.

All the new oral blood thinners other than Exanta® are in earlier stages of clinical development. Thus, these drugs are at least 2 to 5 years away from potentially coming onto the market. The table lists condensed information about developmental oral blood thinners that have entered human trials. It is diffi cult to obtain information about new drugs because of confi dentiality issues. Furthermore, some companies do not immediately publish their clinical study results. This table may, therefore, be incomplete.

After the disappointment in 2004 of not seeing Exanta® FDA approved, 2006 is exciting: several of the new oral blood thinners have gone into large phase 3 clinical trials. Warfarin, with its cumbersome blood monitoring requirements and food and drug interactions, may, at some point, be replaced by better and more user-friendly drugs.

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The Clinical CornerUpdate on Oral Blood Thinners in DevelopmentStephan Moll, MD, University of North Carolina, Chapel Hill, NCJeffrey I Weitz, McMaster University and Henderson Research Center, Hamilton, ON, Canada

New oral blood thinners in development, that are presently being studied in humans

Drug name Company Clinical trial phase Mechanism

1 Dabigatran Boehringer-Ingelheim Phase 3 anti-IIa

2 AZD 0837 Astra-Zeneca Phase 2 anti-IIa

3 Bay 59-7939 = Rivaroxaban Bayer Phase 3 anti-Xa

4 LY517717 Eli-Lilly & Company Phase 2 anti-Xa

5 YM150 Astellas Pharma Europe B.V. Phase 2 anti-Xa

6 Odiparcil Glaxo-Smith-Kline Phase 2 indirect anti-IIa

7 DU-176b Daiichi Phase 2 anti-Xa

8 Apixaban (BMS-562247) Bristol-Myers-Squibb Phase 2 anti-Xa

9 TGN-167 Trigen Phase 1 anti-IIa10 Exanta® (Ximelagatran) Astra-Zeneca Phase 3 anti-IIa

(development stopped)

11 Razaxaban Bristol-Myers-Squibb Phase 2 anti-Xa (development stopped)

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UPDATES FROM THE EDUCATION COMMITTEEElizabeth Varga, MS, Columbus, Ohio

It is always exciting to share the updates of the Education Committee. I am very proud of our accomplishments over the past fi ve months, as well as our plans for the future. I have been inspired by the motivation of our new and existing volunteers who have contributed to NATT’s progress. Thanks to everyone for their support!

New Additions to the WebsiteHave you checked out the NATT website lately? If so, you will see that there are several new resources available. To answer your questions about genetic discrimination, we have added an educational brochure and provided links to other reputable organizations to get information about protective laws and ongoing advocacy efforts (http://www.nattinfo.org/learn-testing.htm). For those of you with children, you will be delighted to see two new educational booklets written by John Peutz, M.D.; the fi rst is on Factor V Leiden (written for children) and the second is “Thrombophilia: A Guidebook for Patients and Families.” You will also fi nd a new “links” page to connect you with other organizations that provide information about blood clots and clotting disorders. The NATT Board recently approved the allocation of funds for a major overhaul and upgrade to the website. You can expect a website that is easier to navigate and has more interactivity in the coming months.

BrochuresOur “Treatment for Thrombosis” brochure is now available in print and can be requested by contacting nattinfo@yahoo.com. Check back regularly for other educational brochures that are currently in the latter stages of development. Within the next month, we will have a NATT brochure available online for “Vitamin K and Warfarin” and “Antiphospholipid Antibodies.” We also expect to have brochures on “Postthrombotic Syndrome” and “Antithrombin Defi ciency” completed soon. Several other brochures are under development, including brochures on women’s issues (oral contraceptives and pregnancy), risk factors for thrombosis, and prevention.

Education Seminars for the PublicIn our fall issue, we announced plans for an April Patient Education seminar in Minnesota. Due to logistical limitations, the location of the conference was moved to Columbus, Ohio, on May 13, 2006. We apologize for any inconvenience this change may have caused. Please note that health care providers are invited to attend the thrombophilia program in Denver, Colorado on June 24th, held in conjunction with the National Hemophilia Foundation.

Information about our most recent education seminars in Chapel Hill, North Carolina and Columbus, Ohio can be found on the NATT website. Both conferences were a great success with 85-150 participants. New topics addressed at these seminars included a discussion of genetic testing and counseling for thrombophilia, presentations specifi c to women’s issues, children and sports. Pending the availability of funds, we will soon begin plans for the next regional seminar.

Education Programs for Health Care ProvidersNATT has partnered with the National Hemophilia Foundation (NHF) to organize two, one-day education seminars for health care providers about thrombosis and thrombophilia. Program highlights include: presentations on arterial and venous thrombosis, inherited and acquired thrombophilias, pediatric thrombosis, women’s healthcare, genetic testing and counseling, and incorporating thrombophilia care into a “comprehensive care” model. The fi rst conference took place on Saturday, April 29, 2006 in Minneapolis, Minnesota and a second is planned for Saturday, June 24, 2006 in Denver, Colorado. Please contact Jennifer Crawford at 212-328-3738 to register. An agenda will be posted on the NATT website soon.

Up and ComingWe are working on building a resource library so that printed brochures and information will be available upon request. Several health care providers have sent their patient resources to us to help get a sense of what is available. If you are health care provider and would like to help build the library please contact us at nattinfo@yahoo.com. Eventually, we hope to have these materials available for distribution to providers and the public.

I hope you agree that we have made great strides this year. Thanks again to all of you who have supported NATT Educational activities.

up to two miles. I still use the pump and take the Coumadin and baby aspirin, along with exercising and wearing hose.

Once, when I was in the hospital, I started feeling sorry for myself until I saw a man who was brain damaged and who was missing an arm and a leg. Since then, I have deliberately taught myself to not think about pain. I’ve always told myself that losing a leg is not the worst thing in the world. Even then, I would still be able to watch Carolina basketball, watch sunsets and sunrises, do my oil painting, and be with my family and the people that I love. I attribute the success of my health today to my faith in God, my doctors, and keeping a positive attitude.

Please be advised that any and all information provided herein by the National Alliance for Thrombosis and Thrombophilia (NATT) is provided for informational and educational purposes only. This information is not to be used or considered as medical advice or as a substitute for consultation with a qualifi ed physician or other health care provider. NATT makes no representation or warranties as to any information contained within its publications and does not endorse any persons who contribute information.

Velton Wainwright TudorContinued from page 4

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Since being diagnosed with a blood clotting disorder in 2003, I have been passionate about helping other people who have experienced blood clots or who have blood clotting disorders. I felt alone and scared after my diagnosis and I wanted to help those who felt the same way. NATT has provided a platform for this passion to help.

On February 18, 2006, I put this passion into motion. The result was The First Annual Denver Area National Alliance for Thrombosis and Thrombophilia Charity Event. It was a great success in every way!

My fundraising idea started as a small event—to open up my house to family and friends for a casino night. However, through networking, the general manager of a restaurant chain heard of my plans and offered to host the NATT fundraiser in one of the private rooms of Champps Americana, in Littleton, Colorado. Champps contacted their vendors who donated beer, wine, tables, and the services of professional poker dealers. To offset the costs of this

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The Power of OneLynn Levitt, Highlands Ranch, Colorado

In January 2006, vice president Lori Preston participated in the third annual Coalition to Prevent DVT meeting held in Washington, D.C. Members of the Coalition to Prevent DVT met to discuss blood clotting awareness issues among patients, public health leaders, health care professionals, and policy-makers. Left to right: Cedric Bills, Coalition spokesperson, Lori Preston, NATT vice president, Melanie Bloom, Coalition spokesperson.

Coalition to Prevent DVT

endeavor, six weeks prior to the event, Champps held a “NATT Night” to help raise money. For every person that we brought in to the restaurant on the designated night, Champps donated a percentage of each bill to NATT.

I began calling upon family and friends to help me coordinate all the details required to make the event a success. We asked local businesses to donate items for our silent auction such as gift certifi cates to area restaurants, vouchers for variety of services, sports memorabilia, and gift baskets. My friends donated their time and talent to design the invitations and the event’s sponsor board. The names of the companies that donated auction items, poker prizes, and funds were displayed on the board located at the room’s entrance.

The event has come and gone, but the atmosphere and spirit of the evening left a positive and lasting impression on the attendees. The night provided laughter and fun, as well as promoting awareness of NATT. The success of the event was reason for thanks and appreciation to all who attended. After much hard work, and many hours of preparation, we were able to raise almost $12,000!

I know that the passion to help lives in everyone. The power of one starts with one person’s passion and energy and contributes to the power of an entire organization. It starts with you, so help make 2006 into NATT’s most successful year!

A Call to Action! Continued from page 1

To ensure that the Workshop focused on the human impact of blood clots, patient experiences were a centerpiece of the two day event. Mike Hefron (patient speaker at last year’s NATT Charlotte seminar) spoke passionately of his near fatal PE and his three year battle with post thrombotic syndrome. Heidi Blanganstainer (patient) related her feeling of hope and gratefulness at having had access to the expertise and quality care of Dr. Samuel Goldhaber at Brigham and Women’s Hospital in Boston. And Mark Jablonski related the tragic story of Jessica Earley (featured in the Fall 2005 NATT newsletter) reinforcing the ultimate cost that many patients pay for delayed diagnosis.

We at NATT are committed to working aggressively and tirelessly to build on the momentum of the Surgeon General’s CALL TO ACTION to address the profound needs that face all of you at risk of, or affected by, blood clots.

Stay tuned to www.nattinfo.org and future issues of the newsletter for developments related to the Surgeon General’s CALL TO ACTION.

*DVT = deep vein thrombosis = blood clot in the veins of legs or arms; PE = pulmonary embolism = blood clot in lungs.

SPRING 2006 / WWW.NATTINFO.ORG

NATT

NATT Donations

The National Alliance for Thrombosis and Thrombophilia is chartered as a charitable 501c3.

Please send donations to: The National Alliance for Thrombosis and ThrombophiliaP.O. Box 66018Washington, DC 20035-6018

Thank you for your support!View our website:www.nattinfo.org

The National Alliance forThrombosis and ThrombophiliaP.O. Box 66018Washington, DC 20035-6018

A W A R E N E S S • P R E V E N T I O N • T R E A T M E N T • S U P P O R T

Make a Difference…Make a Pledge!

Your donations fund the programs and activities that make a difference in the lives of T&T patients:

$20,000 can fund an educational seminar for 300 patients, healthcare providers and family members

$5,000 can fund the production, printing, and mailing of this newsletter or a patient educational brochure

$3,000 can help fund NATT’s outreach to professional medical societies whose members need to be educated to recognize and treat T&T patients

$2,000 can fund the development and hosting of the NATTInfo.org website for a year

Summer 2006

June 24 – Health Care Provider seminar on Thrombosis and Thrombophilia

NATT and NHFFor Health care providersOmni Interlocken ResortBroomfi eld, ColoradoFor more information and a copy of the program please contact nattinfo@yahoo.com

Printing and distribution of this newsletter was made possible by BSN-Jobst, Inc. www.JOBST.com

Calendar of EventsCalendar of EventsCWhat events are happening in your area? Find out about the different thrombosis and thrombophilia related events and activities, when they’re happening in your community, and how you can participate. Also, please check our website for current events happening in your area at www.nattinfo.org.

August 2 through 5 August 2 through 5 August 2 through 5

August 2 through 5 - Health Care Provider Seminar on Thrombosis and Thrombophilia

Mayo Clinic – Bleeding and Thrombosing Diseases: The Basics and Beyond

Kahler Grand Hotel, Rochester, MinnesotaContact: (507) 284-3156 to register