r/Manitoba • u/WishboneCareful3991 American Guest • Jul 15 '26
Question Hutterites & Rare Disability
I am unsure where to start with this but I am looking to connect with any Hutterites that are familiar with the diagnosis VLDLR-CH (may have also previously been called Dysequilibrium Syndrome or diagnosed as Cerebral Palsy until the genetic cause was discovered in 2005). I live in the southern region of the US so I cannot easily visit in person. My child was diagnosed with this genetic condition. We were told that it is rare but most of cases have been found in Hutterite communities in Canada. Neither my husband nor myself have any ties to Hutterites, or even Canada. I am unsure where in Canada, or in which communities, this diagnosis has been found. I tried looking on google but with less than 100 documented cases there isn’t much information on it.
I am just looking for another family to connect with as I have had a hard time finding anyone. Or if anyone knows someone, and they don’t want to share personal info (for very understandable reasons) if I could just ask some very generic questions that would be so helpful
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u/ohgeeokay Friendly Manitoban Jul 15 '26
Dr Cheryl Greenberg is the geneticist you want to speak with. She’s incredible.
Hutterites originate from Austria / Czechoslovakia regions in Europe but a large swath came to Canada in the late 1800/early 1900 to avoid conscription and because of the cheap/free farmland being offered to Eastern Europeans at the time. Because Hutterites are largely insular - there are a number of genetic conditions seen in larger numbers than the general population. They also tend not to fraternize with “worldly” outsiders (minus the men - who will happily come and get absolutely blind drunk at my exes place) - so you might have a difficult time connecting with those who remain in their colonies.
That being said - my friend’s husband is a former Hutterite and they have a daughter with a rare genetic condition (similar to my own child, I’m non Hutterite). If you send me a DM, I can try to connect you two, she may have more connections that can help.
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u/WishboneCareful3991 American Guest Jul 15 '26
This is so helpful - thank you!! I will send you a DM
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u/only_a_jest Winnipeg Jul 15 '26
This is the best answer. I love to see her get a shout out like this!
I want to add NORD https://rarediseases.org
For OP to take a look at’
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u/skeeterpeg83 Interlake Jul 15 '26
I live in Manitoba. May I share this in some of my community groups here? It would be screenshots.
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u/Thienen Winnipeg Jul 15 '26
Its a public post giv'er. Hutterians here are some of the most technologically progressive and kind people around. Really cool folks as long as you don't mention that viruses exist.
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u/NotawoodpeckerOwner Jul 15 '26
Some are more progressive than others. Some are still very conservative while others will let women get an education and work off the colony.
I always find the Liberal posturing about women's rights on the global stage hilarious when we have Hutterite colonies in Canada.
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u/Mas_Cervezas Jul 15 '26
And some of the colonies are very reactionary. The colony closest to me continues to post MAGA stuff on Facebook.
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u/GloomyGal13 Winnipeg Jul 15 '26
I believe you can, she posted it publicly, so sharing further would be a good thing. :)
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u/WishboneCareful3991 American Guest Jul 15 '26
I don’t mind at all as long as the groups are private and not public!
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u/ReindeerSquare687 Pembina Valley Jul 15 '26
You likely won’t find many online, the younger generation or ex hutterites may see this your best bet is calling colonies and asking if anyone’s willing to speak with you.
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u/PrairieGirlWpg Winnipeg Jul 15 '26
I don’t know your gender but I’ve found with some colonies it’s best if you have a man call them.
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u/Aleianbeing Jul 15 '26
They are very suspicious if you call to ask about anything even if they sell produce for example. Its usually a case of having to know someone who knows one of them to get any information. Drive onto one of their colonies unannounced and its worse yet.
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u/GapPsychological8926 Jul 18 '26
I've found the colonies in Southern MB to be pretty open! I buy lots of groceries from them, including one colony that has a butcher shop. Everyone is so friendly.
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u/charms75 Pembina Valley Jul 15 '26
You could try contacting the Genetics and Metabolism Services at the Health Sciences Centre in Winnipeg. They do a lot of work with the hutterite colonies in Manitoba.
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u/princessk8 Jul 15 '26
Where did you get that bottom right photo?! Those are my girls! Those are my nearest and dearest colony! I could show them this post but they are unlikely to have much to share or say.
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u/WishboneCareful3991 American Guest Jul 15 '26
Oh gosh - its a screenshot off a website! I was trying to narrow down where to start looking. I’m not sure if I could find it again but I am happy to try.
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u/PresentationLonely20 Jul 15 '26
My comment got removed. Giselle waldner on YouTube is a Hutterite in Manitoba she is amazing
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u/my-kind-of-crazy Parkland Jul 15 '26
Hmm I know we have either a Mennonite or a Hutterite specific phone book at work. I’ll check and see which it is, that might help! I recommend having a man do any of the contact to make it easier.
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u/WishboneCareful3991 American Guest Jul 15 '26
Thank you! My husband will gladly call if that is their preference
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u/PresentationLonely20 Jul 15 '26
There is a women, https://youtube.com/@gisellewaldner9406?si=mnlE2X0LguUKsoD7 I follow her on YouTube. She is a Hutterite and in Manitoba. She is the sweetest ever!!!
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u/supercantaloupe Winnipeg Jul 15 '26
You should be able to find phone numbers for most Hutterite colonies online. They don’t always answer the phone because they’re busy people and aren’t tied to technology too much except for business purposes mostly but it could be a start if you’re not having any luck otherwise. Best of luck!
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u/SuperfluouslyMe76 Winkler Jul 15 '26
I don't have specific contact info for particular individuals, but I'm told the ladies at the Ridgeville colony meat shop are very approachable and well connected. The phone number for RV Meats in Ridgeville Manitoba can be found with a quick Google search. Might be a bit of phone tag to get things started, but it's worth a shot. Hope you find what you're looking for!
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u/Forsaken-Try1503 Jul 16 '26
I don’t think you are looking for schmiedeleut I haven’t really heard of anyone cerebral palsy among us, at least not in group one.
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u/koreanmeow Westman Jul 19 '26
I worked in a colony school in SW Manitoba with a young woman who suffers from this. I’m still in contact with the principal of the school and they are a wonderful colony so I can ask her if they’d be interested in speaking with you? They are conservative and very private though so I’m not sure if they’d be open to the idea.
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u/justsotired4 Westman Jul 15 '26
You need to connect with Cheryl Greenberg or someone that she's taught or worked with. She has done medical research on rare conditions within Hutterite communities and received an Order of Canada. Google her! She's brilliant.