Samantha Rayburn-Trubyk’s awareness efforts helped Manitoba become the first Canadian province in 2017 to declare October 25 as Dwarfism Awareness Day.

Today, on the occasion of this anniversary, she is looking for more than just awareness.

Rayburn-Trubyk is leading efforts to open a specialty clinic for skeletal dysplasia, a medical condition in which bones do not or cannot grow in the usual way. There are more than 400 types of skeletal dysplasia, including dwarfism.

And they all have health problems, such as spinal stenosis, sleep apnea and hydrocephalus, says Rayburn-Trubyk, president of Little People of Manitoba and the Advocacy Director for Little People of America.

“There are a lot of them and it really could be a life or death situation. Having a specialist here who could help and who knows the ins and outs of everything would be just phenomenal,” she said, noting that a Winnipeg-based clinic could serve Manitoba, northwestern Ontario, Saskatchewan and the Northwest Territories.

“So there’s a huge community that could benefit from this.”

Currently, anyone needing specialized care must travel to the United States, Toronto or Vancouver, Rayburn-Trubyk said in an interview with CBC Manitoba. News radio host Marcy Markusa.

Last October, Little People of Manitoba funded two specialists to come to Winnipeg: from Johns Hopkins University in Baltimore, Maryland, and the University of British Columbia.

“They came to meet local doctors here. We wanted to provide (Manitoba doctors) that connection…so they could have someone to turn to if they encountered someone with skeletal dysplasia,” said Rayburn-Trubyk.

As for opening a clinic in Manitoba, Rayburn-Trubyk says there are two local doctors willing to help get the ball rolling, as well as a philanthropist who has offered to help raise money on a large scale, she said.

However, one actor is missing.

“We need – and what we’re asking for – is a meeting with the province,” Rayburn-Trubyk said.

“We’ve scheduled it several times and rescheduled, and (there’s) nothing planned at the moment. I would really like to have a conversation with the Minister of Health and the Prime Minister.”