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Highlights of the first Canadian Fabry Association Board of Directors Meeting |
On Sunday May 14, 2006, a day after the First Annual Canadian Fabry Association and National Patient Conference, the CFA board of directors held their first board meeting at the Lord Nelson Inn & Suites in Halifax, Nova Scotia.
Those elected and present at the meeting included Darren Bidulka, Julie Cowie, Graham Crouse, Ed Koning, Gaétane Saulnier, Roseline Saulnier, Rick Sgroi, Donna Strauss, Evelyn Williamson, Durhane Wong-Rieger as well as Sandra Cater. Julia Strauss was not able to attend.
The draft agenda was modified and approved to include a discussion and vote on a nomination of an additional board member. According to the By-laws (Section 4.07), the Board may fill existing vacancies and as such, a motion was made and approved to accept Sandra Carter of Nova Scotia to the board.
Nomination and election of Officers then took place with the following to serve as officers Adrian (Ed) Koning - President, Evelyn Williamson - Vice President, Durhane Wong-Rieger - Secretary and Rick Sgroi - Treasurer.
Various committees were then formed. The Finance and Administration Committee was established to develop and manage the CFA budget, bank account, auditors, expense policy reimbursement etc. Members volunteered were: Rick, (Chair), Durhane, Darren, Ed (ex-officio)
The Program Committee was established and is to be responsible for review and monitoring of CFA mission/vision statements, by-laws, Orphan Drug Policy/Expensive Drugs for Rare Disorders, Canadian Fabry Guidelines Research Protocol, and future Medical Advisory Board. Members volunteered were, Durhane (Chair), Julie, Donna, Sandra, Ed (ex-officio)
The Resource Development Committee was established and responsible to review and report on possible Provincial Chapters, Website, Marketing (Materials & Brochures), and Fundraising. Members who volunteered were: Graham (Chair), Julia Straus; Evelyn, Julie Cowie, and Peggy Kennedy (Edmonton - volunteered on fund-raising and CFA library). Ed is ex-officio member.
The board then discussed the announcement of a 3-year funding agreement as well as the Canadian Research Protocol. All had mixed emotions. Seems that the governments are now finally on board but there continues to be concerns with timing of funding and when ERT will be started for those that have been cutoff as well as those new patients that meet the strict Canadian guidelines. Also the Canadian Research Protocol must still be approved. It was agreed to thank key decision makers involved but to still advocate that ERT should be administered and provided as a preventative therapy, using international standards and guidelines, and to begin treatments for children at a very young age before any organ damage occurs. Communication with all stakeholders will continue.
The board then discussed current priorities for the CFA. Networking and supporting each other in an effort to identify and have all Fabry patients in Canada diagnosed and treated properly is a priority. In order to improve communication it was agreed that a website as well as updated brochures will be developed. With these and other tools the CFA can increase awareness of Fabry, increase its membership base and continue education and advocacy. Other areas include awareness of private insurance, home infusions and to work with other patient organizations in an effort to improve access to orphan drugs via a Canadian Orphan Drug Policy.
If you would like to become a member of the CFA and/or volunteer with any of the committees established or have any suggestion, please contact the CFA.
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