On March 31, 2017 and April 1, 2017, the Volunteer Leadership Council (VLC) met in Seattle, WA for a 2-day training conference in conjunction with the Seattle NF Patient and Family Symposium. This year's pilot event, was successful in attracting more local participation than is usual for an educational event. The Seattle Children's Hospital and Children's Tumor Foundation collaboration proved to be a new model to learn from.

Please remember that the materials provided on this site are training materials and should not be shared publicly. If you wish to share the page with another volunteer on your team, please do, but we ask that you don't post them on social media sites, in blogs or other public venues. If you aren't sure, please ask. Thank you for your discretion.

The first day opened with a welcome from the VLC acting Chair and Senior Manager of Volunteer Engagement, Connie Sorman and local VLC Washington Representative, Christa Castanon. Children's Tumor Foundation President and CSO, Annette Bakker and Salvo LaRosa, VP, Research and Development, then educated the group with a volunteer-related Foundation Update (resource below). This was followed by a Volunteer Leadership presentation by Connie Sorman, which served as a reminder of what might be expected in the relationship between CTF and its volunteer leaders and included a shout out to volunteers video (also below). Kristine Poirier, Director, Regional Development, Emily Crabtree, Director, Development Operations, Angela Earle, Director Development Innovations & Kids Program, presented an Overview of the New Regional Model for Development and explained how the changes will serve volunteers and the NF community alike.

Each year, we ask our Task Force teams to provide the VLC with a summary of the work that they have been engaged in. This serves two purposes. It outlines additional opportunities for VLC members to engage as part of a team working toward specific goals over a specified period of time to enhance the work of the Foundation. Furthermore, it allows the Task Force Teams the opportunity to share details, in a live setting, about their many hours of hard work. The 2016/17 Task Force Updates were provided by: Advocacy Coordinator, Shannon McNall, and team member, Diane Owens, Awareness Co-coordinator, Stacey DeCillis and Secretary, Lara Mukabenov, NF Clinic Network Co-coordinator, Samantha Canane and Secretary, Morgan Clayton, Patient Engagement Coordinator, Sarah Adsit and Team Member, Karlie Savage.

In addition, the Awareness task force team reviewed their upcoming "Letter to the Editor Campaign" for May Awareness month (details in the Program Booklet linked below) and the Advocacy Team, with Pennie Brooks, Team Member, and Staff Advisor, Simon Vukelj, provided an entertaining training skit to demonstrate How to Meet with your Representatives. This came in response to the significant number of requests from volunteers after the 2016 training conference. Although there is currently no call to action, it is encouraged that our Volunteer Leaders familiarize themselves with the process so that when there is a call, we are ready for action. A video of the training skits is linked below. The training powerpoint is included below.

The application process for new task Force opportunities will begin in mid-July with member selection in early August and initial meetings to be held by the end of August. Priority will be given to VLC members and anyone who served on a Task Force in the previous year. Please contact Connie Sorman if you are interested in being offered the chance to apply even if you are not currently a VLC member.

Simon Vukelj, VP Marketing and Communications provided a glimpse of the upcoming May Awareness Campaign, which will be rolling out for 2017, along with a touching video celebrating the important work done by volunteers.

The day rounded out with two brain-storming and idea sharing rotations from Regional Development team members, Kristine Poirier, Emily Crabtree, Angela Earle and Kelly Mills, West Regional Manager. The topics were: Recruitment/Community Building and RD Event Updates & Fundraising. Many ideas were generated in response to a variety of situations/questions that were presented.

Day two began after an informative and thought provoking Symposium Agenda. The first presenter was Kate Kelts, Patient Support Coordinator. Kate provided insight into the responsibilities that she handles for the Foundation and the NF Community Support that she provides. She also reviewed the ways in which she can be helpful to the Volunteer Leaders and how they might assist her in making new connections. Kate's presentation is below.

Following Kate was a presentation from Vanessa Merker, Boston University and Traceann Rose, Director Patient Engagement. Vanessa and Traceann outlined the work of the REiNS Initiative in the area of patient advocacy and shared an upcoming project led by Traceann, to educate and empower patient advocates who would have opportunities to be involved in the research process. Stay tuned for additional information about how you can participate.

The next agenda item was a round-table item where discussion began to generate ideas for ways that the VLC could continue to meet of the VLTC discussion was very productive and informative to all. The costs involved with the current model were discussed in conjunction with the growth of the VLC from 40+ Chapter Leaders to 75-90 VLC members qualified for sponsorship each year. Additionally, discussion covered the responsibility of the Foundation as a 4-Star Charity with Charity Navigator for 7+ years to make sound financial decisions and the benefits of having Volunteer Leaders engaged in face-to-face connections with one another on a regular basis. The ideas and suggestions were noted and the VLC Executive Committee, along with Connie and input from the Regional Team, will continue the discussion in order to come up with a feasible plan going forward. If you have anything, which you think might add to the discussion, please email Connie at csorman@ctf.org.

The "Our Shining Examples" Volunteer Recognition Awards concluded the conference. A separate announcement about that can be found here.

Lastly, it was time to introduce a brand new VLC Executive Committee (EC) as the previous team's two-year term had ended and the former chair, Connie Sorman, had since been hired as a staff member at CTF. Connie Sorman, Chair, Karyn Santovito, Vice-Chair, and Anita Gribben, Secretary, served together from 2015-2017 and were the very first VLC Executive Committee (the Chapter Council evolved to the Volunteer Leadership Council in 2015). The VLC EC serves two year terms with the opportunity to serve two consecutive terms in any position. The new VLC EC, appointed in the business meeting of this year's conference, is Renie Moss, Chair, Anita Gribben, Vice-Chair and Gwen Coverdale, Secretary. Congratulations to the new team! You can find their bios in the Program Booklet below.

Program Materials

Program eBook