One in every 3,000 people worldwide has neurofibromatosis, a condition that causes the growth of tumours on nerves anywhere in the body. Neurofibromatosis is not a condition that is well understood by many in the community including parents of those with NF, physicians, health practitioners or even those with NF themselves. iD2 was asked to facilitate a strategic planning session for BCNF and create a communica-tion plan to address organizational goals. We were also asked to provide media relations services for an upcoming international conference on NF. It was important that strategies began to engage stakeholders and also important to know whether the needs of existing members were being met. Audience Those with NF and their families, physicians, health practitioners, NF researchers and the Canadian public at large.
Research began with a series of one-on-one interviews and the development of a survey instrument that could be distributed to all BCNF members. Through analysis of survey resultswe were able to determine the organization was meeting the needs of most members and only minor changes to existing programs and communication methods were needed. We developed a media kit that included concise facts about NF itself; a fact sheet about the history of the organization and a calendar of events for that year. We also made small recommend-ations for the website to support promotional efforts and provide consistency.
We developed personal stories with those willing to share the difficulties of this condition. These stories were written from interviews and later templates were delivered so the three stories we created could be added to at a later date. This proved to aid the newly diagnosed person and educate the general public. Templates were also created so that over time new stories could be added.
We worked to continue bringing media closer to the NF story which included highlighting Reggie Bibbs, a U.S. speaker at the conference who is well known for his “Just Ask” campaign; as well as promoting a comedian who has NF and uses this in his condition in his routine.
The organization was able to confirm that it was meeting members needs and the next steps expected as the BCNF evolved. The conference was well attended and media relations for the conference resulted in a radio interview and this paved the way for continued contact with interested journalists.
Due to the positive response from survey interviewees, the executive
board for the communications plan and the media response, iD2 was asked to continue its work and create a strategy to address the general public. iD2 created a travelling photo exhibit called
“The Nerves of Some People”. Since a professional photographer had offered their services during the conference to photograph individuals and families, iD2 took the opportunity to create a nation-wide exhibit. As this exhibit travelled, pieces would be added from across Canada by other donating photographers. Administration and set-up would be limited to one person while using local volunteers in each city. A total of 22 cities were planned for set-up in coffee shops and local sponsored venues. NF Canada is seeking funding and sponsorship for this project and indicated that “The proposal rocks! The Board is very excited and committed to this project”.
Communications Planning / Media Relations Valerie Elliott & Heather Leary
Survey and Interview Facilitator / Writing Valerie Elliott
Design & Production Stephan Jacob