Teresa

There was a benefit concert August 10, 2006 put together by Jazz for Peace and produced by my sister, Minda Cowen in NYC for The Teresa Bogstad fund at the Children's Cancer Foundation. Flyer with details

Histiocytosis Association of America

The National Organization for Rare Disorders

FDA: Orphan Diseases Site

Children's Cancer Foundation

A special thanks to everyone who helped care for Terry, to those who helped care for our other daughters, to the 'family' of Tufts University and to the wonderful folks at Tufts Health plan who did everything possible to allow us to give Terry her best chance. You are good people.
New! We donated Terry's leftover Neocate formula to The BMC Grow Clinic for Children . They are always looking for formula donations, both perscription and non-perscription. If you have formula to donate you can email Deborah Frank, the director at dafrank AT bu.edu

Teresa Michelle Bogstad


(Oct 1, 2003 -- Feb 18, 2005)

New! 2008 UPDATE: The first research paper funded by this research is now appearing in the British Journal of Haemotology. Scroll down for title and abstract.

Our daughter, Teresa Michelle Bogstad, passed away on February 18, 2005 after a life-long battle with Langerhans Cell Histiocytosis, also called LCH. She is survived by her (non-identical) twin sisters. While LCH is not technically classed as a cancer, currently, it is treated by pediatric cancer doctors with chemotherapy drugs. A memorial service was held on Friday, February 25th at Goddard Chapel at Tufts University.

  • Terry's story
    • In Teresa's memory, we are trying to raise money to fund a very targeted research study into a promising new drug against LCH. LCH is an "orphan" disease, meaning that the number of children who will get LCH in this country is too small for LCH research to typically qualify for federal funds. Even Boston Children's Hospital, a major children's hospital in a big city, sees only 2-3 children diagnosed with LCH each year. But: It looks like we could be less than 3 years away from going into human clinical trials with a cure for this disease that spares affected children the horrible side-effects, risks, and complications of general chemotherapy. Such a drug will not save thousands; but if we save even a few children like Teresa each year, it will be worth developing.

  • About LCH and the approach to a cure

    • Contributions should be sent to The Children's Cancer Foundation -- The Teresa Bogstad Fund". The Children's Cancer Foundation is a 501(c)(3) charitable organization, and all contributions are tax deductible. I have spoken to the founder, Shirley Howard, and every dollar raised for the Teresa Bogstad fund will go 100% to Dr. Bob Arceci's research group at Johns Hopkins to pursue promising new therapy for LCH. Here's Why we chose the Children's Cancer foundation for this fundraiser.

    How to contribute:

  • Make your check out to "The Children's Cancer Foundation".
  • Somewhere on your check, mark it "For the Teresa Bogstad fund".
  • Send your check to: The Children's Cancer Foundation, 1052 Flagtree Lane, Baltimore, MD 21208.
  • If you prefer, you can give your checks directly to us, but if so, please make sure they are made out to "The Children's Cancer Foundation" not to us personally!

    • If 5,000 people give $20 each, 1000 people give $100 each, 50 people give $1000 each, and 5 people give $10,000 each, we will have raised $300,000. This is enough money for the 3-years of laboratory work and research in mice that are a necessary precursor to human clinical trials (at which point the project could qualify for funds from the FDA's orphan disease division to start human clinical trials.) If instead you wish to run any sort of fundraiser in your community to help raise money (a benefit concert; a golf tournament) let us know and we'd love to help you with it.

    2007 UPDATE: HOW ARE WE DOING WITH OUR FUNDRAISING?

    New! 2008 UPDATE: The first research paper funded by this research is now appearing in the British Journal of Haemotology. Here is the information:

    Br J Haematol. 2008 Feb;140(4):420-8. Epub 2007 Dec 19.

    Title: Telomere length shortening in Langerhans cell histiocytosis.

    Authors: Bechan GI, Meeker AK, De Marzo AM, Racke F, Jaffe R, Sugar E, Arceci RJ.

    Department of Oncology, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD, USA.

    Langerhans cell histiocytosis (LCH) is a clonal, proliferative disorder of phenotypically immature CD1a(+) Langerhans cells (LC). The aetiology of LCH is unknown and data supporting an immune dysregulatory disorder as well as a clonal neoplasm have been reported. Telomere shortening has been associated with cancers and premalignant lesions as well as promoting chromosomal instability. To determine whether LCH LC have altered telomere lengths, we used dual detection of CD1a expression by immunofluorescence and telomere length by fluorescence in situ hybridization of LCH LC and lymphocytes in local, multisystem and systemic LCH and compared these with telomere lengths of LC and lymphocytes in reactive lymph nodes. LCH LC showed significantly shorter telomere lengths than LC from reactive lymph nodes or unaffected skin. Lymphocyte telomere lengths showed similar profiles among the different samples. These data show a significant telomere shortening in LCH LC in all stages of disease involvement compared with LC from reactive lymph nodes, suggesting that LCH may share mechanisms of telomere shortening and survival with clonal preneoplastic disorders and cancer, although an initiating infectious or immune event is still possible.

    Here's a dense hard to read page that I wrote about what I have learned both about LCH and about issues with treating it given our current diagnostic abilities and current drugs we have available. It includes a description of the LCH skin rash that I hope is helpful for those that are not sure what it looks like. The intended audience for this page is parents of LCH patients and their doctors.

    The reason for all this is the kids who are still battling this horrid disease.

    Here's a link to a story about another great kid battling LCH in California. Send your hopes and prayers for 2-year old Patrick.

    Here's a link to Ivy's website -- Ivy is a baby in California also battling LCH.

    New! Here's a link to a page for a brave 2 year old named Logan who was just diagnosed with LCH this past April.

    Here are some more sites I found recently with kids battling LCH: Christopher's story, Aidan's webpage. , Ellie Clare, Christian's LCH . Please pray for them all.

    This page was created by Lenore Cowen and Bill Bogstad on February 20, 2005 Last updated on February 19, 2008.