**Mark Jablonski**

My story \[and the story of The National Alliance for Thrombosis and
Thrombophilia (NATT)\] begins with two people: J.T. Coleman and Jessica
Ruth Earley. JT is 8 years old and happens to be my nephew. When JT was
2-1/2 he had a common minor surgery. The surgery was successful with no
complications and he was sent home the next day. Later that day, he
began experiencing pain and swelling. Without seeing him, his doctors
decided that he must have an infection and put him on antibiotics. The
next day the pain and swelling were worse and my sister and
brother-in-law brought him back to the hospital. He was rushed into
surgery to remove the tissue that had died because he didn't have an
infection, he had a blood clot. Why would someone so young have a blood
clot? JT developed a blood clot because he had three genetic
thrombophilias, that is, bad genes that make someone susceptible to
blood clots (Factor V Leiden, Prothrombin 20210, and Protein S
Deficiency). Thankfully, JT is now an active 8 year old. He plays
baseball and golf---no contact sports, though because he is on Coumadin
and will be until medical science finds something better. JT has
something in common with his Uncle Mark, and his cousins, two of my
three children\--we have thrombophilia, too!

[The second person I need to introduce you to is Jessica Ruth Earley, a
member of the Appalachian State University color guard squad. Like many
young ladies her age Jessie was very self conscious about her
complexion. Her gynecologist explained that one of the beneficial side
effects of hormone based contraceptives would be to help clear her
complexion. So Jessica started on the pill and then went to the patch.
The patch cleared her complexion, but, because she was one of the
approximately 7,000,000 women in the United States with Factor V Leiden,
Jessica's body became a ticking time bomb. Jessie's mom Kathy introduced
me to her in August 2003. I didn't get to meet Jessie in person though,
because, you see, Jessie passed away in May 2003. She had just turned 21
years old. Jessica died of massive blood clots in the vein to her liver
and the other major veins in her abdomen. By the time she was properly
diagnosed, after months of suffering from fatigue, nausea, and,
ultimately, a grotesquely swollen abdomen, it was too late to save her.
Jesse wasn't lost to an incurable disease, she was lost to
ignorance---ignorance that put her in danger, ignorance that delayed her
access to readily available life saving treatments, ignorance that,
ultimately, extinguished the potential of another young
life.]{.underline}

[When people ask me what my story is, or what is the story of the
National Alliance for Thrombosis and Thrombophilia it is the story that
is written by the hundreds of thousands people like JT and Jessica who
suffer, each year, the long term and sometimes fatal consequences of
blood clots. ]{.underline}

The National Alliance for Thrombosis and Thrombophilia is a nationwide,
community-based, volunteer health organization established to promote
better awareness, diagnosis, treatment, and support for people who have
had or are at risk for developing, blood clots. NATT was formed in
August of 2003 after the Centers for Disease Control and Prevention
invited several patients, doctors and other health care professionals to
discuss the state of affairs in thrombosis and thrombophilia. I was one
of those patients. The visionary who initiated the meeting was Dr. Bruce
Evatt, a current member of NATT's Medical and Scientific Advisory Board
and past director of the division of hereditary blood disorders at the
Centers for Disease Control and Prevention. Dr. Evatt understood the
unfortunate gap in the current research and treatment of thrombosis and
the overwhelming need for patient advocacy. We formed NATT to fill the
gap.

[We have identified the following key problems relating to blood clots
and clotting disorders and are committed to addressing them on a
national level:]{.underline}

-   [Insufficient awareness of risk factors for blood clots among
    health-care providers and the public, leading to missed diagnosis,
    or delayed diagnosis ]{.underline}

-   [Insufficient screening for risk factors and lack of consistent
    screening guidelines]{.underline}

-   [Insufficient use of known preventive measures, including the use of
    blood thinners for prophylaxis]{.underline}

-   [Insufficient knowledge about the availability of treatment options,
    and lack of standard of care]{.underline}

-   [Insufficient number of thrombosis specialists and specialized
    treatment centers]{.underline}

-   [Insufficient availability of care in many geographic
    areas]{.underline}

[The National Alliance for Thrombosis and Thrombophilia]{.underline}

[addresses major treatment issues to:]{.underline}

-   [Prevent thrombosis and its complications.]{.underline}

-   [Reduce death and illness related to thrombosis.]{.underline}

-   [Assist in establishing guidelines for prevention, treatment, and
    management.]{.underline}

-   [Promote funding for and establishment of comprehensive
    thrombophilia programs to allow every patient access to thrombosis
    specialists within a reasonable distance where patients
    live.]{.underline}

-   [Promote and assist scientists with research efforts relating to all
    aspects of thrombosis and thrombophilia.]{.underline}

-   [Encourage activities to increase the number of specialists in
    thrombosis and thrombophilia, such as endowing training
    fellowships.]{.underline}

-   [Initiate and promote educational activities for the medical and
    patient community, and for the public. ]{.underline}

-   [Create a network of self-funded local chapters to improve the
    quality of life for patients/families through appropriate
    support.]{.underline}

-   [Create a national policy agenda and a grassroots advocacy
    network.]{.underline}

[Since its genesis in 2003, NATT has had a tremendous impact while also
having very few resources. Through the efforts of our dedicated Board of
Directors, volunteers, and a premier Medical and Scientific Advisory
Board, NATT is at the forefront of educating patients and healthcare
providers on the broad issues of thrombosis and thrombophilia. In close
cooperation with local medical and community resources in Denver,
Detroit, Charlotte, Chicago, and Pittsburgh, we have conducted public
seminars for over 1,000 thrombosis/thrombophilia patients, family,
friends, and healthcare professionals to provide them information to
learn and cope with the daunting effects of blood clots. The
participants' responses shared from the seminars reinforce the
tremendous gaps in awareness in both the public and healthcare
community. ]{.underline}

[Additionally, through NATT's website and the selfless efforts of our
Education committee and MASAB, health care providers now have access to
a compilation of peer-reviewed patient education material on thrombosis
and thrombophilias, including factor V Leiden, antiphospholipid antibody
syndrome, post-thrombotic syndrome, family testing, and others via the
"Health Care Provider" section of NATT's website (). The information is
written with the patient in mind to help providers educate themselves
and their patients and promote a better patient experience and
outcome.]{.underline}

[Through ongoing cooperation with organizations such as the American
Society of Hematology, CDC, Anti-Coagulation Forum, the DVT Coalition
(Sanofi-Aventis) and others, NATT hopes to magnify its message of
awareness, hope ]{.underline}

[While much has been accomplished, much, much more needs to be done.
]{.underline}