VLTC 2018 ~ Atlanta, GA

On May 4, 2018, the Volunteer Leadership Council met for an annual training conference in combination with the Patient-Centered Outcomes Research NF Forum in Atlanta, GA.

The conference opened with a welcome from Renie Moss, VLC Chair and Connie Sorman, Sr. Manager Volunteer Engagement, CTF and was followed by a Foundation and Science update from Annette Bakker, President and CSO, CTF (slides included in files below). Annette’s presentation was punctuated by loud disco music and staff descending on the room wearing and tossing t-shirts to announce the brand new retro-style logo printed on 40^th Anniversary commemoration t-shirts! This was a great way to start the day, get creative juices flowing and pump the room full of excitement!

Simon Vukelj, VP of Marketing and Communication, CTF was up next continue the momentum in sharing the status of Marketing and Communications initiatives for May Awareness and 40^th Anniversary celebrations. Simon also provided some reminders about branding policies concerning use of logos and slogans and fielded questions on the topic.

Allison Goetsch, MS, CGC from Lurie Children’s Hospital then shared some information with the group about Transition Readiness in Adolescents and

Young Adults with Neurofibromatosis Type 1 (NF1). She shared the goals of the project, the need for research on this topic, the process for developing a survey to assess transition readiness and how you can help the project’s success. Please view the slides included in the files below. For questions or more information, please contact Allison Goetsch at: agoetsch@luriechildrens.org

We then began a daylong exercise of creating a memory cloud to share our experiences, inspirations, memories and hopes with one another. Participants wrote on post-it notes and stuck them to the wall to form a cloud. The activity culminated in the later part of the afternoon with sharing around the room. It was an incredibly emotional and uplifting segment, which certainly provided the added knowledge of our collective impact on one another to propel us through the remainder of the year. Please see the attached photos for examples.

Next on the agenda, were two small group breakout sessions facilitated by the Regional Development staff: the Fundraising Life-Cycle, which had attendees broken out into groups based on the perceived current level of fundraising or where we thought individuals would be able to contribute best to conversation and Community Building: Engagement, Event Growth, and Relationship Building. The two topics provided different angles to allow participants to share and learn form one another about what has worked well and what the challenges have been as well as giving everyone the opportunity to brainstorm and discuss anything that came to mind. (Some notes from these sessions will be in the files below.)

The Volunteer Recognition Awards (VRA) took place over lunch. The theme for this year’s event was “A Historical Tribute to 40 Years” where Foundation history was shared around events related to each of the awards. Our apologies for not being able to share this live via the GoToMeeting, but there were some technical challenges that could not be solved quickly enough to make it happen. Congratulations to all of the nominees and winners of the 2018 VRAs! Photos and names of this year’s recipients are listed below along with a slide deck of the nominees for each award. Additionally, the recipients will be featured in an upcoming blog article on the CTF website. Stay tuned!

The Harvest Dinner DIY topic was tabled due to time constraints, but will be discussed on the next VLC Roundtable in July.

We rounded out the afternoon with Awareness Bingo and a 40 things to do in the 40^th Year discussion. Bingo was a fun kick start to the discussion, which began in small groups at each table and concluded in a large circle with hot-potato sharing of ideas (meaning we based some balls around the circle and when the music stopped, the person holding the ball shared an idea from the group). Great ideas were generated from this activity and a list is included in the files below. The challenge was made for each attendee to take ideas back to the respective community and to challenge others to use the list to raise awareness locally. At this point, we also went around the circle to introduce ourselves and tell our reasons for involvement. The hope was that, in using the mentor system for newbies this year, meeting one another throughout an interactive agenda and with encouragement for inclusion, would be organic. This exercise was only meant to fill in the gaps of that process, which would carry out through the weekend.

The 2018 Task Force groups took the opportunity to update the rest of the Council about progress with work that they are doing for Volunteer Engagement–Mentorship and Regional Development and to ask for help and support from anyone interested. Please see the handouts in the e-book linked below.

The business meeting for 2018 was a simple acceptance of the 2017 minutes and the entire group met outside the room for the photo above.

The feedback received was genuinely constructive and overwhelmingly positive. The outpouring of love and gratitude was evident through Workplace and social media sharing during and after the weekend. To use the wise words of your VLC Chair, Renie Moss:

“Leaving 2018 NF Forum with fresh wind in my sails with encouraging research updates provided by the leading experts committed to helping us better manage and treat the physical and psychosocial challenges of living with neurofibromatosis.

I cannot express how important all these people are to me. They “get it” and have walked more than a mile in my shoes as affected adults or parents or friends of loved ones living with NF. I am so thankful for all that they do to fundraise, advocate, and raise awareness to #endnf in our lifetime.

Thank you to our incredible Children’s Tumor Foundation staff for never giving up on us in your commitment to fight along side us.”