Volunteer Leadership Training 2016

On June 17, 2016, the Volunteer Leadership Council (VLC) met in Austin, TX for a day of leadership training in conjunction with the NF Forum and Medical Conference. One hundred and two volunteers met criteria (see Recognition Structure document), based on 2015 volunteer service, to be offered membership in the VLC for 2016 and to participate in the Recognition Structure. Ninety volunteers, of those who were eligible, completed the VLC Registration process, thereby accepting the invitation to be included as a 2016 member, and to participate in the Recognitions (see 2016 VLC Members by location).

The day began with a welcome from the VLC Executive committee, Connie Sorman, Chair, Karyn Santovito, Vice Chair and Anita Gribben, Secretary and a volunteer related foundation update from Children's Tumor Foundation President and CSO, Annette Bakker. This was followed by a 2015/16 Task Force recap and wrap up by the Task Force Leadership teams: Advocacy was Coordinated by Morgan Phelps, co-coordinated by Kia Hamel, Renie Moss served as Secretary and it was Advised by Connie Sorman and Simon Vukelj/Squire Patton Boggs. NFCN (NF Clinic Network) was Coordinated by Kelly Carpenter, Lauren Gottlieb-Mora served as Secretary and the Advisors were Anita Gribben and Heather Radtke. Registry was Coordinated by Brandie Evans, Co-coordinated by Krista Frederick, Kelly Peterson served as Secretary and Advisors were Karyn Santovito and Pam Knight. Each group had a total of 10 members, all CTF volunteers, and all three Task Forces were instrumental in meeting their goals; thereby in enhancing the work of the Foundation. Much gratitude to everyone who donated his/her time, talent and treasure toward these valiant efforts.

The 2016/17 Task Force opportunities were then introduced and goals brainstorming rotations were held for: Advocacy, NFCN, Registry, Patient Engagement and Communications task forces. The application process for these new 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 not a current VLC member, but served on a previous Task Force and would like to be extended the opportunity once again.

Reid Horovitz, Cheif Operating and Financial Officer, gave a financial overview of the Foundation from the volunteers' perspective. Reid was able to explain the impact of fundraising on the Foundation's ability to fund NF research and to share the expense landscape to offer perspective on responsible spending practices of CTF as a 4-Star Charity with charity Navigator.

There were two Expos on the agenda this year. The first was related to fundraising events and the other was dedicated to non-fundraising events centered around Community Building and Patient Engagement. Five or six categories were chosen and presenters created visual displays and were available to discuss specific questions or comments about their events. Each presenter provided a one-page guide and everyone went home with plenty of resources and new ideas to use in his or her own community (see Expo files below).

Desiree Sher is the Executive Director of the BC Neurofibromatosis Foundation in Vancouver, Canada. She is also a happiness coach, speaker and author. Her passion is to inspire others to expand their happiness and create a life they love. As editor of the Inspire Magazine she is always encouraging people, far and wide, to share their stories. She believes that through the power of storytelling and opening our hearts, we can change our world. Desiree rounded out the agenda with a "Why Your Story Matters" presentation and story-writing workshop, in which she pointed out that every story matters and no matter what brought us to the NF Cause, or what motivates us to fight for NF, each of us possesses a powerful tool in the form of our individual stories.

The first annual Volunteer Recognition Luncheon took place in Austin as well. The Forum theme of "You've Got the Power" was embraced with Superhero themed awards. Nominations were for each award were made by the VLC members and a staff committee made the final determinations. Ten volunteers received awards at this year's event. 2016 Awardees were as follows:

Program Materials