New Endometriosis Center Launches With $3M From Marriott Foundation

After 14-year-old Emily Hatch of Wellesley was treated for endometriosis at Boston Children’s Hospital, her mother, Mary Alice, asked the surgeon what she could do to help researchers find better treatments and ultimately discover a cure for the painful, chronic disorder.

That conversation led to a gift of $3 million from the foundation started by Mary Alice’s grandfather, J. Willard Marriott, to launch the first-of-its-kind Boston Center for Endometriosis, “a joint undertaking to discover causes, promote prevention, and develop new treatments and cures for the disease of endometriosis,” according to an announcement to be released today by Boston Children’s Hospital.

The Center will be the first in the world to both conduct research and treat endometriosis in women of all ages, from adolescence — when the disease often begins — through adulthood, according to Children’s Hospital. The Center will include a unique repository to collect urine, saliva, tissue and blood from patients in order to research potential biomarkers and non-surgical diagnostics, to find new treatments, and eventually a cure.

Emily Hatch saw seven specialists and underwent numerous invasive tests over 18 months to try to figure out what was causing her terrible abdominal pain before she was finally diagnosed and treated at Children’s. Read her full story on CommonHealth here.

More than 6 million women in the U.S. suffer from endometriosis, which occurs when cells that normally grow in the lining of the uterus (endometrial cells) start growing in other parts of the body. The resulting implants or lesions can be extremely painful and if left untreated, the condition can cause infertility.

The Children’s Hospital press release is here:

BOSTON, Mass., April 18, 2012 – Boston Children’s Hospital and Brigham and Women’s Hospital today announced the inception of The Boston Center for Endometriosis, a joint undertaking to discover causes, promote prevention, and develop new treatments and cures for the disease of endometriosis.

The Center is the first in the world of its kind and will serve as the premier diagnostic, treatment, research, and educational resource for the disease throughout a woman’s lifespan, from adolescence through adulthood.

“The Boston Center for Endometriosis is unique in its features,” says Marc R. Laufer, MD, Chief of Gynecology at Boston Children’s Hospital, and a gynecologic surgeon in the Center for Infertility and Reproductive Surgery at Brigham and Women’s Hospital. “Currently, no one in the world has a teen-through-adulthood endometriosis program that can ensure both seamless clinical care for patients while conducting research to fuel scientific progress.”

The J. Willard and Alice S. Marriott Foundation today announced a $3 million leadership commitment to Boston Children’s Hospital to launch the Center and support its research efforts.

The Foundation’s gift will fund the Center’s innovative database and biorepository and the Endometriosis Research Awards program to encourage scientists to participate in the search for a cure. Half of the gift is a challenge grant that is contingent on raising another $1.5 million in research funds.

“The Center, through integration of clinical and scientific disciplines will bring together leaders in the study of endometriosis to advance our knowledge across the life-course through innovations in genetics, lifestyle, and environment to promote long-term health,” says Stacey Missmer, ScD, Scientific Director of The Center and researcher at Brigham and Women’s Hospital.

“Through our Foundation, the Marriott family has tried to make a difference in the world by supporting causes and organizations that share our ideals. Under Dr. Laufer’s leadership, we believe The Boston Center for Endometriosis will improve the future for girls and young women suffering with this devastating disease,” says Richard E. Marriott, Chairman, The J. Willard and Alice S. Marriott Foundation. “We hope that by matching gifts dollar-for-dollar, we will encourage individuals, families and organizations that care about this cause to join us in supporting the Center and accelerating discoveries that ultimately will lead to a cure.”

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  • Kerry Anne Sheehan

    If you haven’t found a good Dr yet check out Dr. Einarsson at the Brigham. I have stage 4 and he was amazing. He is known for liking the tougher cased :)

  • eperez

    what about treatment or alternative surgery for adenomyosis?

  • Vally

    Going to
    Boston Center for Endometriosis? I am a patient there, and have to say it has
    not been the best experience (although it has only been a couple months so the
    jury is still out). I like you have stage 4 endo, although not as severe (it
    has not infiltrated my bowel) I am 30 and have been struggling with this for
    years, but was only diagnosed with it recently. I became a patient at the
    center after my surgeon referred me there. The 1st Dr. (who is the chief of
    this center) I saw almost refused to treat me because I am stage 4, which he
    claimed he does not treat anymore. I found out later that he actually does
    treat stage 4. This dr did order an MRI
    to make sure my endo was not infiltrated, well getting this appointment was
    like pulling teeth, because his secretary kept messing up my paperwork. Finally
    I did get my appointment for the MRI and was suppose to see this Dr. 3 days
    after (per his instructions to the secretary) but turned out he couldn’t see me
    for 3 weeks and refused to squeeze me in. So needless to say I switched to
    another Dr there. He seems a little better, but I don’t agree with everything
    he has to say (he said I could wait several years to have children, um I am 30 with stage 4 endo, and ovaries that look like a war zone. Wait? I don’t think so). He put me
    on Aygestin, but has more or less refused to do further surgery even though the
    original surgery only removed 2 large cysts (one only partially) I have
    implants all over my bladder, in my cul de sac, next my bowel and all over both
    ovaries. I have major GI problems (they were so bad I took a semester off from
    school because of them, and can only function now with the assistance of 4
    different medications, all of which have side effects that drive me nuts) I have major bladder issues and pain, yet I am suppose to live like this. My point is from what I have seen at the Boston Center for Endometriosis is the same old care you can get anywhere ( offering Lupron is not a new concept), their office seems unorganized, and I really did not appreciate the 1st Dr. trying to refuse to treat me (esp. since I had explained the GYN who did my surgery referred me out of her care). It was very upsetting to be treated like there was hope for me because I have stage 4 endo, I thought this place was suppose to be helping woman in the battle against endo, not turning them away because they have stage 4…

    • alison

      I have also suffered with advanced staged endometriosis & was first seen by the same dr you were referring to & did not have good results after surgery & lupron therapy for 3 yrs. If I can make one suggestion to you, it would be to go see Dr Kanayama at the NY Endometriosis Center. He is an excellent dr & specialist in treating only endometriosis. Going to him & the surgery he preformed has changed my life. I have intestinal endo stage 4 & it was debilitating, I was unable to live life until after I had the surgery he preformed using his unique excision of endo lesions. I would seriously reecommend you going to Dr Kanayama for treatment!!!! At least look at his website

  • wantingtohelp

    i am a patient of Dr. Laufer….and i was just wondering how to sign up and get started with helping finding a cure? i have stage 4 endo

  • Guest

    While its great that this disease is getting more publicity. Dr. Laufer is not the dr. i would be giving money to. he DONES NOT EXCISE and treats most cases of adolesents with endo with LUPRON. His feelings on Lupron are to just keep you on it FOREVER, even though the FDA doesnt think its safe to use for more than 1 year. Well i was on it for a bit over a year and I now have MS like symptoms likly caused by the drug. Stay away from Dr. Laufer and find someone who can treat you correctly.

    • guest

      I as well, was on Lupron for 2 years at a high dose and after 4 surgeries with the last one being a full hysterectomy, I am still in pain. The Lupron did not relieve anything for me, but it’s different for everyone. I also had bio-identical hormones put into my hip for a year and had a major allergic reaction and has left red hollowed, indensions in both hips!(Collagen will not grow back) I am also left with RA/auto immune diseases, UTI’s/kidney stones, & major bowel issues. I am not a patient of Dr Laufer and truly don’t know if it was the amount of Lupron I had & taking birth control pills since 15, but I know that something caused all of this inflammation & continued pain when I was ‘supposed to be healed’ from my hysterectomy! ~Do your homework on the medications- a lot of meds for estrogen & thyroid are made from animals and are said to be ‘natural’. They are only FDA regulated because they were grandfathered in… just be careful trusting the first doctor. Get lots of advice and do your own homework!!! I have spent thousands of dollars on doctors and meds that have only made me worse… Just praying for a cure soon and that I haven’t passed this disease on to my (miracle) daughter!~ praying for all of you & THANK YOU for starting a Center for Endo, the more we know, the better!

  • Heather

    thank you guys so much for doing this you are helping so many women across the world =] !

  • Pelvicpainsolutions

    As a pelvic pain advocate and former Endometriosis sufferer for over 13 years, this is encouraging news for the many young women who have yet to be properly diagnosed with this disease.  Endometriosis is unbelievably painful to endure on a monthly basis and can bring your entire body to a weakened state.  Now that I am symptom-free after undergoing a hysterectomy, I now devote my life to helping others manage their chronic pelvic pain.  This disease gave me the compassion to deeply connect with others living in pain.  Sadly, I have met so many women along the way who feel hopeless knowing their lives are surrounded in pain.  I am hopeful that the younger generation will stand a fighting chance and there will come a time when a cure is found!  I’ll spread the word to my customers and on my blog about the news…THANKS!

  • Asb2424

    Endovan! Research it, it’s worked wonders for me.

    • saireygamp

      Endovan does nothing but empty your pocket book

  • Rachel Zimmerman

    Posting for Mary Alice Hatch:

    I am thrilled that my family has chosen to support The Boston Center for Endometriosis at Children’s and the Brigham. Having a data base and tissue repository for Endometriosis is an important step towards finding better treatment and a cure for this debilitating disease.  We hope the leadership grant our family has given will motivate others to support Endometriosis research. This disease affects millions of women by leaving them in chronic pain and  robbing them of their quality of life. The current treatments for my daughter have not worked well and I am hopeful that the research done through the Boston Center for Endometriosis will uncover some new treatments that are more effective.

  • saireygamp62

    For outstanding discussions, including input from many of teh leading surgeons in the country can be found on Facebook at :  Endometriosis Research Center DiscussionBoard.  Its a closed group so sensitive questions can be discussed without fear family and friends will be looking in. 

    • saireygamp

      This discussion board has closed but another Nancy’s Nook Endometriosis Discussion, Education and Support is available on Facebook

  • David Redwine, M.D.

    Actually, the first center devoted exclusively to research and treatment of endometriosis was established in Bend, Oregon, in 1987 at St. Charles Medical Center. We here in Bend are happy that Boston has finally joined in an effort that began so many years ago in the last millennium. 
    David Redwine, M.D.
    Nancy Petersen, R.N.

    • Guest

      The center is the first of its kind to specifically study endometriosis in adolescents through adulthood, to offer continuity of care.

  • Janine

    This is huge for women suffering with this disease. I am 31 and have suffered since I was young and it took me 15 years to get a diagnosis. Anything to help young women not go what I have been through really makes me happy. Thank you to all of those who have made this happen!

  • Chris

    Having suffered endometriosis related infertility and ovarian cysts , one of which almost killed me and the other necessitating a hysterectomy at age 37, I am glad to see this disease finally being taken seriously.  The many infertility specialists I consulted all ignored endom. as a factor, instead recommending a raft of expensive, uninsured experimental treatments in spite of the fact that I was definitely diagnosed withe endom.  In retrospect, I think they didn’t have a clue as to how to treat endom. but wanted to keep me as a guinea pig for their experiments

    • saireygamp62

      Endometriosis should always be excised before IVF because it reduces inflammation and improves the chance of success.  The other reason is that often endo excisoni is the only thing that needs to be done for a pregnancy to happen.

      On Facebook  Endometriosis Research Center Discussion Board has outstanding information, all research based and a number of world class surgeons answer questions for women with endo.  It is a marvelous group with outstanding discussions.

  • Jaboomday

    Yes PLEASE explore the effects of diet on this disease. I treat my endometriosis completely naturally with a special diet and all of my symptoms are gone. I can’t take medications or birth control (like many women) and this was my only choice.

    • Reasonable?

      What type of diet did you use?

  • Reasonable?

    I hope that diet is explored as a contributory factor for this proliferative condition.
    Diets that reduce anabolic signaling might be preventive or adjuvant to current therapies for this condition.