MRKH Canada

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Kingston, ON
MRKH Canada

MRKH Canada is a not-for-profit that aims to support, educate and empower those born with, or affect

OUR MISSION
MRKH Canada's mission is to educate, empower and support those diagnosed with Mayer-Rokitansky-Kuster-Hauser Syndrome (MRKH) within Canada and beyond through advocacy, events and other organized initiatives. Our organization stands as an advocacy group, support network and resource for both the medical community and those diagnosed with, or supporting those with MRKH. We aim to increas

e the knowledge and decrease the shame and stigma attached to the condition, as well as to improve the quality of life and care for those living with the syndrome.

02/14/2025

Happy Valentine’s Day! 💖🌺Whether you love it or hate it, we hope you have a GOOD day filled with love and laughter!

Art by

02/10/2025

Our next MRKH virtual support group is Wednesday, February 19th.

Join to connect with each other, make friends, ask questions, share stories and support one another on this journey.
*For people with MRKH only.*

Register through the link in our bio or click here: https://www.mrkhcanada.ca/event-details/virtual-mrkh-support-chat-2025-02-19-19-00

02/06/2025

Brrrr it sure is cold out there! 🥶 What are some of your favourite things to keep warm in this chilly weather? I (Shannon) love curling up by the fire reading a good book! How about you?

01/31/2025

Meet Our Team!
Introducing: Sunni Anne Ball, Vice Chair
Sunni has been a prominent volunteer in the MRKH community for over 10 years. She was diagnosed with MRKH at twenty years old, just after winning the Wakeboarding World Cup Stop in Russia. Being newly diagnosed with MRKH while on tour as an elite athlete in an extreme sport was an interesting start to the long journey that has been coming to grips with MRKH. At thirty-nine, she is grateful. She has been with the MRKH Canada team since the very beginning, when it was incorporated in 2021.

01/24/2025

!
Did you know people with MRKH ovulate, but do not menstruate? People with MRKH typically have ovaries and therefore can experience an ovarian cycle and all of the hormonal symptoms that come along with it: mood swings, cramps, breast tenderness, acne breakouts, etc.. However, due to a lack of cervix and functional uterus, people with MRKH do not experience a period. 🩸

MRKHers! Do you experience any ovulation symptoms each month?

01/15/2025

Don’t let the cold stop you, let’s have some fun! MRKH Canada challenges you to go outside and do ONE fun winter activity this month. Build a snowman, go skating/skiing, make a hot chocolate, and post below to let us know what activity you did or post a photo and tag us .

01/07/2025

Join us next week for our next Virtual MRKH Support Chat! Wednesday, January 15th from 7-8pm EST. (We apologize about the last two that either had to be cancelled, or dealt with technical difficulties. Our New Year’s Resolution is to hold our online support groups consistently every month!)
Register on our website: mrkhcanada.ca

01/03/2025

Receiving care as someone with MRKH Syndrome can involve a whole team of healthcare providers: gynaecologists, psychologists, physio therapists, fertility specialists, the list goes on.

Finding healthcare providers that provide a positive experience and are familiar with MRKH can be a challenge, which is why we are working to expand our Canadian MRKH Specialist directory to include recommendations of all of the above practitioners.

To do so, we need your help!

Do you know a Canadian healthcare provider you would recommend to others? Please send us a private message or email us at [email protected].

(NOTE: All recommendations will be verified and followed up with by our team before being added to our Directory.)

12/23/2024

MRKH Canada Team Shout Out! 🗣️ A big thank you to Sandra as she steps down from her role as treasurer. As a proud MRKH Mom, Sandra has been part of the MRKH Canada team from the beginning, acting as treasurer alongside her daughter, the founder of MRKH Canada, Ashley. Though she’s dedicated the past three years to MRKH Canada, she has dedicated the last 12 to helping Ashley through her MRKH diagnosis. She may be stepping down from her role as treasurer, but Sandra plans to continue playing an active role in MRKH Canada’s efforts in other ways. Check out our last post to meet our incoming treasurer!

12/21/2024

You may remember Lillian as the person who raised the most donations during this year’s annual 5000 Metres for MRKH Fundraiser, or as one of the speakers at our 2024 MRKH Conference. Well, now we are excited to welcome her on board, literally. Lillian will be joining our Board of Directors as treasurer.

Lillian recently discovered MRKH Canada, 32 years after she was first diagnosed with MRKH. Ashley was the first person with MRKH Lillian spoke to since her diagnosis - and was instantly inspired to support MRKH Canada. Drawing on the strength of her diagnosis, Lillian is ready to share her story and is looking forward to being part of the MRKH Canada Board to support the efforts of the organization - having participated in the 5000 Meters for MRKH and spoken at the annual conference. When not participating in volunteering activities - Lillian is the SVP Retail Operations with Cadillac Fairview and has oversight of the Canadian portfolio of shopping centres. She has been in property management for over 29 years – with over 25 of those years at Cadillac Fairview – working in various roles, beginning in accounting, moving on to leasing and General Manager roles. In 2021 she moved into the VP Office Operations role overseeing Western Canada before moving into the national role in January 2024, relocating from her hometown of Vancouver to Toronto - where she currently resides with her husband Fred and her beloved golden retriever, Daisy.

Welcome, Lillian! ☺️

12/14/2024

Exciting research update! Our first collaborative research project, The Bloom Study, partnered with Queen’s University, has officially been published in the Journal of Pediatric & Adolescent Gynecology. Read our article, “Don’t give up, advocate for yourself”: A pilot study examining healthcare experiences of people with Mayer Rokitansky Küster Hauser syndrome (MRKH) here: https://www.jpagonline.org/article/S1083-3188(24)00350-4/fulltext
(Link in bio)

12/10/2024

We’re so sorry we had to cancel our November support group, but are happy to be back on December 18th with another. This virtual chat is only for those who have MRKH Syndrome. Join to connect with each other, make friends, ask questions and share each others’ stories.

Register on our website, MRKHcanada.ca

11/28/2024

MRKH Canada has officially hit a huge milestone since incorporating back in 2021… registered charity status! Becoming a registered charity in Canada is no small task, and it’s taken years to finally achieve, which makes it that much more exciting to announce!

What does this mean for MRKH Canada?
⁃ Being recognized as an official charity brings more credibility to our organization and the work we do
⁃ We can now provide tax receipts for donations
⁃ We can apply for grants and fundraise in more ways, which will allow us to do even more for the Canadian MRKH community! 💜

11/07/2024

Give the gift of MRKH awareness this Holiday season... Cozy hoodies, toques, T-Shirts, Bags, Mugs and More! MRKH Canada receives 10% of the proceeds from the online store, which was created for us by Specialty Trophies.

Link in bio to order!
Or click here: https://specialtytrophies.ca/4g/mrkhcanada/
trophies

10/15/2024

Want to connect with others who have MRKH? We’re officially launching monthly online support chats! Join us for the first of many, starting Wednesday, October 23rd at 7PM EST. These chats will take place as video calls on Google Meet.

Note: This chat will be monitored/moderated by a mental health expert to ensure the safety of those involved. This person may not have MRKH Syndrome, but does have an understanding of the condition.

Register here: https://www.mrkhcanada.ca/event-details/virtual-mrkh-support-chat-2024-10-23-19-00

10/07/2024

Thank you to everyone who attended our first Toronto MRKH Conference on Saturday, September 28th. It was a great event with even greater company. We hope to see you all again next year!

09/15/2024

Get excited! The conference is fast approaching. Here is the agenda for the day. If you are planning to attend, please register soon, as we need to order the food! 😋

REGISTER NOW: https://www.mrkhcanada.ca/event-details/toronto-mrkh-conference-2 (Link in bio)

08/29/2024

Are you planning to attend the Toronto MRKH Conference on September 28 and looking for a hotel room? We have a special group rate with Chelsea Hotel, just 5 minutes from the venue. Click the link below, or call the hotel directly, toll free, at 1-800-CHELSEA (243-5732) or 416-595-1975. Let them know you are booking with MRKH Canada to take advantage of the discounted group rate. The special rates are only available until September 3, so book soon!

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Kingston, ON

Website

http://www.mrkhcanada.ca/

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Our Story

Hi there!

This event started out as the "First Ever Kingston MRKH Conference" in 2018 and was started by MRKH advocate Ashley Clark (that's me!).

I was sick of travelling the 6-9 hour drive to the closest MRKH conference in Boston for support and networking with others born with MRKH. After receiving my diploma in Public Relations & Event Management, I decided to start my own conference for women in Canada.

After the first one was a success, I decided to make it an annual event. After my second conference, I caught the eye of Sick Kids, who asked if I would hold a conference with them in Toronto. That’s when I realized I couldn't call it the “Kingston MRKH Conference” anymore.

Since I am currently the only one in Canada hosting MRKH meet-ups (that I'm aware of), I’ve decided to brand my advocacy as “Canada’s MRKH Conference”! I hope by creating this name for myself it will expand into more than just my meet-up and that I can provide other MRKH women & specialists resources to supporting and educating one another.

WHAT’S MY STORY?

Hey there! I’m Ashley. I was born and raised in Kingston, ON. I was also born with MRKH Syndrome, just like 1 in 5000 other women in the world. I was diagnosed at the age of 16 and told I would never be able to carry a child or have a period. My MRKH symptoms included an underdeveloped uterus and the absence of a cervix and va**na, but I know many others have additional oddities like missing kidneys or spinal issues.

Through high school, I kept MRKH mostly to myself apart from my close friends and family. But deep down I knew, it wasn’t something I wanted to hide. I discovered the supportive sisterhood of MRKH women online and it changed my life for the better. I decided I wanted to be part of that change for others.

I slowly began telling more people about MRKH, conquering the shame of having the syndrome. It was in my fourth and final year of college when I officially took the plunge and came ‘out’ with it. I graduated from Public Relations and Event Management and immediately put my diploma to use, launching my first MRKH Conference. Now, I am an active advocate of the MRKH Community. On top of organizing my own conference, I have volunteered and spoken at the Boston Children’s Hospital MRKH Conference, held fundraisers for MRKH, raising public awareness and grabbing media attention and even gone as far as educating a high school classroom about my syndrome.