Hydrocephalus Canada

Members Approve Proposal to Create New National Association

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February 28 – At a Special Meeting of the Spina Bifida and Hydrocephalus Association of Ontario (SBHAO), held Sunday, February 26, 2017, members voted to approve the proposed transition of SBHAO to Hydrocephalus Canada.

Board Chair Claudio Cinapri, chaired the meeting, which was called to advise members about the proposal and to explain why the Board was recommending the change in geographic reach and organizational focus.

Claudio told the group that gathered at Holland Bloorview Kids Rehabilitation Hospital that there are four key factors behind the Board’s decision to recommend that SBHAO transition into a national charitable organization with a new mandate and primary focus on hydrocephalus.

These key drivers include the fact that widespread prevention efforts and public education have been effective in reducing the incidence of spina bifida. At the same time, he said, the prevalence of hydrocephalus is increasing. An estimated 100,000 Canadians have this chronic condition.

Like many charities, Claudio said SBHAO is increasingly challenged to make ends meet. “As a Board, we are obliged to consider the long-term sustainability of the organization.” Board Secretary, Katherine (Kasia) Parent shared the feedback she has received from large corporations that have been approached for financial support. Many of them, she said, are looking to support charities with a national presence.

The genuine need for and growing demand from both the public and within the professional community for a national association to support people with hydrocephalus also factored into the Board’s deliberations.

And finally, the Board felt that SBHAO, with its extensive knowledge and experience with this growing community, is well positioned to fill a gap as the national voice for hydrocephalus.

Claudio made a point of saying that SBHAO is not abandoning the individuals and families it currently serves. “On the contrary,” he said, “we are trying to find a way to ensure that your needs continue to be met well into the future. And we are committed to working with you, and with our partners and service providers across the province to assess the broader spina bifida community’s needs and to figure out, together, how best to continue meeting your needs.”

Vice Chair Justin Parappally walked members through the legalities of making the transition to a national charitable organization and changing the association’s name.

Following the formal presentation, members in attendance were asked to identify what strengths and advantages they saw in the proposal on the table. They were also asked what concerned them about it, what aspects of SBHAO they felt were important to hold on to as the organization extends its geographic reach, and what’s not working currently that needs to be addressed or jettisoned all together.

A summary of this discussion will be created to help inform the planning process and service delivery going forward.

Having established that a quorum was present earlier in the meeting, members were then asked to vote on the by-law changes required to initiate the transition. The motion was carried by more than the two thirds majority required.

The Board will meet this week to review the outcome of the special meeting of the members and to move forward with the transition of SBHAO to Hydrocephalus Canada.

Please stay tuned as our plans take shape. As promised at the meeting, we will keep all members apprised of our progress and welcome your engagement in the process.