The debilitating affliction neurofibromatosis, or NF, could gain some much-needed awareness in Manitoba if MLAs vote to recognize May as NF Awareness Month.
Riding Mountain Progressive Conservative MLA Leanne Rowat introduced a private member’s bill at the beginning on May that will go to its first vote in the legislature today.
“I know how hard the NFMB group works to create awareness and fundraise,” Rowat said. “They deserve to have this officially recognized.”
Affecting one in 3,000 births in Canada, NF is a neurological disorder that causes tumours to form on nerves. These types of tumours can cause complications such as disfigurement, bone deformities, learning disabilities, epilepsy and cancer.
Tracy Gregorash-Brennan founded the NF-Manitoba support group eight years ago after her son Seth was diagnosed with the disorder.
The non-profit organization connects families throughout Manitoba that are dealing with NF, as well as holding events to raise money and awareness.
“Having NF month recognized would help with raising awareness for sure,” Gregorash-Brennon said. “We are working to create more consistency with our events and having a month that the whole province recognizes would be huge.”
NFMB works with 80 Manitoba families that have a family member with NF. Brennan-Gregorash said similar groups exist in B.C., Ontario, Quebec and most of the U.S.
“In addition to the bill, I have been asking families to send me their stories and also send them to their own MLAs,” Rowat said. “This helps to show that it is not something that is exclusive to my riding.”
NF affects more than 10,000 Canadians, making it more prevalent than cystic fibrosis, which receives more awareness and fundraising through their annual Shinerama campaign across the country.
“We are not asking for money, we are not asking for equipment,” Gregorash-Brennan said. “We are asking for help with awareness.”
Before today’s vote, Rowat will present a number of NFMB petitions bearing signatures from throughout Manitoba in support of making May NF Awareness Month.
“If they don’t pass the bill I would be surprised,” Rowat said. “There is no money attached, it is simply to recognize that NF deserves a month, too.”
Today is also the Winnipeg Run 4 NF. Brennan-Gregorash said they are expecting about 100 participants.
Republished from the Brandon Sun print edition May 29, 2014