Mission and Rationale



Our Mission


  1. Bring together all patients with Medullary Thyroid Carcinoma with expert health care providers in the field.
  2. Utilize the resources of the NIH to bridge shortcomings in basic and clinical research.
  3. Provide storage of tumor samples, that then can be accessed by researchers throughout the world.
  4. Disseminate new information in the field of pediatric and adult medullary thyroid carcinoma.
  5. Develop innovative treatment protocols.
  6. Help foster collaboration between patient advocacy groups, basic researchers, and clinicians dedicated to improving outcomes for individuals with MEN2.

It is our commitment to describe complicated issues in language that is clear, precise, but most importantly, simple, so that any adult or adolescent can readily understand every page of this website.  We realize that the difficulty of reading scientific articles is similar to that of reading in a foreign language.  The lack of familiarity with medical and scientific terms sometimes makes simple concepts extremely difficult.  Dissemination of scientific information will always remain our top priority, but presenting it in understandable language will also be one of our main concerns.


Rationale for the Clinic


flower

Take a look at the flower shown on the right. If we asked you to describe this flower, many of you would give eloquent descriptions. But there is something different about this flower. Please take a closer look and try to describe this difference. With the exception of botany specialists, it is unlikely that anyone would recognize the subtle difference. Click the Show/Hide tab below and continue reading (click "Show/Hide" below").

But this flower is one of many. Take a look at the pictures below. Now it should be much easier to see what is different about this flower.

  • flower
  • flower
  • flower
  • flower
  • flower
  • flower

Many of you have probably thought ahead and started to ask, “Why is the inside of this flower blue when the inside of all of the other flowers are red?” There must be something about this flower that makes it blue while the others are red. You may have also asked, "Are all of the blue colored flowers the same?" The only way to answer this is to collect as many blue flowers as possible.

So that is what we did. We now have a collection of 14 different blue flowers. Shown below are close-up images of five of them.

  • flower 1
    Flower 1
  • flower 2
    Flower 2
  • flower 3
    Flower 3
  • flower 4
    Flower 4
  • flower 5
    Flower 5

Notice that there are many subtle differences in even the blue colored flowers. Two have yellow inner centers (Flower 2 and Flower 4). One has a thick outer purple rim (Flower 3). And one has enhanced purple intertwined streaks (Flower 5). Let us concentrate on the flowers with the yellow centers. If we had any indication that the process that resulted in the yellow centers was due to, or caused, the flowers to be blue, we would invest a lot of our time and energy in studying the yellow centers. Now consider the flower with the purple rim (Flower 3). How important is that feature as it relates to whether the flower is blue or not? If we now told you that after looking at 100 different types of flowers, 89 of them also had a similar purple rim, that would probably lead you to believe that the purple rim does not have anything to do with why the flower is blue, and it would be much less important to devote resources to study this particular feature.

The analogy should be clearer now. The red colored flower is a variant of the Rose of Sharon, first described in the Song of Songs 2:1. The blue colored flowers represent patients with MEN2/MTC. Prior to the inaugural MEN2/MTC clinic, we did not know how many patients would have similar features in their medical histories. What we found was that patients ranged in clinical course from those with no recurrence of tumor to those who have never been free of tumor. Symptoms and treatments also differed markedly.

It is our belief that as we continue to see patients with MEN2/MTC, that we will soon be in a position to determine what changes are common to patients and are fundamentally important to the tumor process.

Some of the questions you may have asked when reading about the flowers are:

  • Why is the flower blue?
  • Are all of the blue flowers the same?
  • Is there a way to change the blue flowers back to red?

The questions that we posed during the inaugural MEN2/MTC clinic were:

  • What causes MEN2/MTC?
  • Are all patients with MEN2/MTC similar?
  • What treatments are available for patients with MEN2/MTC?

The flower analogy most readily explains the format we chose for this clinic. Our belief is that the best way to study MEN2/MTC is to amass information for every young patient with MEN2/MTC. The inaugural clinic was very successful in this regard and provided the foundation upon which to expand our knowledge of this rare tumor and to begin answering some of these important questions.