Global MRKH Founders C

The Mission of Global MRKH is to improve the health and wellbeing for all who are touched by MRKH. Global MRKH is an international collective of Health Care Specialists, Researchers and Advocacy groups dedicated to improving patient care, biomedical research and the psychosocial needs of affected individuals and family members.

The Condition called Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome manifests between weeks 5 to 18 of gestation and results in incomplete Müllerian (female reproductive tract) development. Clinically, MRKH is often diagnosed as Mullerian Aplasia/Agenesis, Uterine Agenesis, Vaginal Agenesis and/or congenital absence of uterus and vagina (CAUV). Aplasia means failure of an organ to develop or functional normally, while Agenesis means failure of an organ to develop during embryogenesis. In some countries, MRKH is also called Rokitansky Syndrome, Küster-Hauser Syndrome or Rokitansky-Küster-Hauser Syndrome.

The Founders of the Global MRKH are Alison Hensley, Amy C. Lossie, PhD, Christina Ruth and Jaqi Quinlan. The founders act as independent members of Global MRKH, forming the first official international consortium of MRKH organisation leaders, community representatives, health care professionals and adults who have been diagnosed with MRKH.

The Administration of Global MRKH is shared equally by the Sisters for Love MRKH Foundation (SFL) and the Beautiful You MRKH Foundation, Inc. (BYMRKH), who jointly established Global MRKH on 1 June, 2015. Sisters for Love MRKH Foundation, founded by Alison Hensley and Jaqi Quinlan, is based in Australia. The Beautiful You MRKH Foundation, founded by Amy C. Lossie, PhD and Christina Ruth, is a 501(c)(3) charity based in the United States.

The Goals of Global MRKH are to:

Provide a forum where nominated members from standalone MRKH foundations, medical institutions and research groups share ideas and best practices to advance support and awareness initiatives; improve health care and treatment options; and promote research across the global MRKH community.

Further biomedical research of MRKH, including supporting studies that address: 1. Well-being and emotional support; 2. Psychological and psychosocial outcomes; 3. Potential causes; and 4. Treatment options.

Coordinate a global platform to ensure the highest standards of care for research studies and clinical trials based on local and international guidelines.

Organize a panel of senior-level members dedicated to addressing the goals and objectives of Global MRKH, whereby members must fulfill selection criteria to avoid national duplication and repetition amongst the MRKH community.

Raise funds collaboratively through agreed activities and promotional events, whereby all council members vote in accordance with the Global MRKH guidelines, including external grants and/or awards from supporting organisations to ensure the ongoing progress and future development of Global MKRH objectives, goals and visions.

The vision of Global MRKH is to foster collaboration amongst clinicians, psychologists, researchers and patient advocates to: 1. Provide support to those diagnosed with MRKH; 2. Increase  awareness of MRKH; and 3. Improve outcomes for all who are affected by MRKH.

We ensure that the official support networks represented by the Global MRKH founders are sustainable in representing this unique community. In addition, Global MRKH will remain responsible and neutral in all matters raised by the media and our community. As key representatives of various MRKH constituents, members pledge to use evidence-based medicine for all matters concerning MRKH Syndrome both nationally and internationally.

The founders- Global MRKH

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4 thoughts on “

  1. Here is Misty’s story and why she wrote the poem – it’s a strong and touching story. Thank you Misty for wanting to share your story on MRKH Norge! You are a brave and strong lady!
    I am an orphan without relative, survivor of abuse and no roots …then on top of it I found at 17 I couldn’t have children and no Dr. could explain. When I saw how many were out there with hurting hearts, I had to put the last 25 years of my life down in a poem for all of my warrior sisters in hopes that they wouldn’t feel so alone and to see that if I can do it then they can too.
    Dear MRKH Sisters absent a womb, felling you’ve lost your purpose… and much way too soon
    The cross you must bear with silence and shame…Weights hard on your shoulders with heavy deep pain
    Somehow deeply rooted in your DNA, maybe some base pair didn’t quite find its way
    I started from nothing with nowhere to go, what’s my legacy…. and how will I show
    You look to your left….and there you see, a womb filled with purpose…a limb on a tree
    Heavy to your right…..and there they will go….a family of plenty… a generation to grow
    You’ll fake menstruation just to fit in…contemplating who’ll love you from species of men
    Too many times and often you’ll hear, advice meant for helping…..but piercing your ear
    …”How lucky you are and happy to be, not dealing with diapers or full family….”
    You’ll be free to come to and then fro, not dealing with bottle…nor buckle…nor bow
    Surrounded by mammalian on hoof and or paw….semi quenching your burning of not mothering at all
    You’ll place a full pillow under garment to see, what it’s like with child about month of three
    “Will I ever feel better and what could it be, my purpose oh God, you created for me?”
    My tears fall like water over the rocks of my fall, surely never subsiding….and a hard heart…
    Not my CALL!
    Listen my child… Earths a small part….. It takes wise strong children to speak on my part
    Created much stronger, and soon you will see, along with your sisters…a strong fight you won’t flee
    I call you all Mothers… Of Orphans you’ll care. You’ll dry many tears and mend many cares
    You’ll tend to my widows… the homeless …and tart, I’ll give you my words and you’ll speak on my part
    See, I have equipped you for plenty and soon you will see
    MRKH suits you perfect ……for Mothering for me
    Misty

    Like

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