2016 Update

We would like to sincerely thank our participants in our sarcoidosis studies. Without your participation, we would not have the knowledge we have today. 

Research Findings

  • In our last letter, we told you about the progress we made in understanding that some blood markers may help identify when patients may be more likely to have persistent lung disease. These studies need to be validated with the goal to get the blood markers into the clinic for your doctors to have access.
  • The biggest finding of 2015 and 2016 happened as a part of being involved with the NIH on the study called GRADS. From the samples obtained, we discovered an important cell type in the blood and lungs of patients with sarcoidosis. This cell type is called a “Th17.1” cell and can be very inflammatory. Our hope is that we can get more NIH funding to find out whether this cell is a marker of progressive lung disease or whether it helps resolve the lung inflammation. Our findings from this study have opened up a new area of research in sarcoidosis. Thank you to all who committed yourself to this study!

What can we do with this information?

These discoveries are critically important for many reasons:

  • Discoveries such as CXCL9 (a protein that can be identified in the blood) represent important biological tools for pharmaceutical companies as they perform clinical trials and can use these biomarkers to assess a patients’ response to a therapy.
  • The Th17.1 cell we have newly identified in sarcoidosis, which can be involved with the disease process, has opened up an area in sarcoidosis that may point researchers in new directions for new types of therapies that could target this cell type.
  • These findings give us hope that in the future we will have several biomarkers to use in clinical practice and new drugs focused on these new biomarkers with the goal of decreasing side effects of therapy.
  • These findings can help educate doctors about the symptoms that patients with sarcoidosis suffer from so they may be better in finding ways to alleviate the suffering.

The goal we are all working for is to find a cure and stop the suffering!

Where are we going from here?

  • We have reached a big milestone in our study as we are completing the 5-year time point, so thank you all who participated. What a commitment!
  • We are starting another study that is focused on something called “epigenetics”, which means we are interested in understanding how the environment affects the DNA of people with different forms of sarcoidosis. This is the first time this type of study has been attempted and will provide much needed information about which genes should be studied as they relate to how a patient’s clinical course happens over time.
  • We are also in negotiations with the sponsor of the FDA approved medication, Acthar, to begin our first medication related study in sarcoidosis.

How can you get involved?

  • Well, you already have! We are very grateful for your time and dedication to this research.
  • There are new studies which you may be interested in hearing about. Feel free to reach out to us.
  • Remember that as tax-payers, we all can get involved in our cause. We can contact our California Senators, Dianne Feinstein and/or Barbara Boxer, or our San Francisco Representative, Nancy Pelosi. We need to inform these government representatives that more attention needs to be paid in recognizing the disabilities inflicted by sarcoidosis, and improving resources for patients. If you don’t live in San Francisco, your local Representative can be found at www.house.gov/representatives/find

Again, we are very grateful for your time and dedication to this research effort!

On a more personal note, we are happy to congratulate Sara and Melissa on their accomplishments as they (sadly) leave the team to begin their medical school career in the fall, while Joris continues on to his second year after briefly joining us over the summer. We are also very happy to welcome Zoe, Sid and Nicholas to our team!