2015 CF Adult Advisory Council

Transcription

1 2015 Annual Report

2 2015 CF Adult Advisory Council Throughout 2015, the CF Adult Advisory Council continued to contribute important input and guidance on many different initiatives to further help the Foundation provide people with cystic fibrosis the ability to live full and productive lives. The charge of the CF Adult Advisory Council is to convey the hopes, needs and aspirations of the CF adult community. Our group gathers insights not only from personal experience, but collects input from their own communities to address the unique challenges and circumstances for adults living with CF. I am so proud of the work this group has accomplished this past year and look forward to broadening our engagement efforts in Sincerely, KC White Chair, CF Adult Advisory Council Board of Trustees Officer

3 Communications The CF Adult Advisory Council continues to be one of the most beneficial sounding boards for the Foundation on new developments. Members of the Council are a part of a variety of projects including offering opinions and feedback on the new Foundation website, resources, and videos. Click here to view this animation The AAC gave valuable insights to the Get Germ Smart campaign to help people understand what goes into a response to an invitation. These insights were developed into an animation and became one of the most shared videos on social media in The Council has provided input on numerous topics since the launch of the new website and will continue to be a go-to group for topic building: Input on terms and phrases in the community like avoiding the terms CFer and breathe easy Input on transplant material & supporting illustrations Input on new Treatments & Therapies and Family Planning pages 2015 saw the launch of the new cff.org, including the community blog. AAC members are always brainstorming ideas for this section and are interested in spousal and sibling support topics. Click here to view the CF Community Blog

4 CF Adults and Chapters The CF Adult and Field Subcommittee collaborates on new and innovative ideas to engage adults with CF at the local level; this work is particularly important because infection prevention and control can make it challenging for people with CF to become, or continue to be, involved in local Chapters. Best practices have been recommended and a point person has been identified at each chapter to spearhead this initiative. Some engagement ideas implemented so far include informative newsletters with biographies on a person with CF, speaking opportunities to highlight life with CF, and flyers highlighting ways people with CF can be involved. The Council helped the Field Department in deciding upon a direction for the 2016 Great Strides t-shirts. CF Adult and Field Subcommittee, a subgroup of the AAC, also developed Best Practices for engaging adults with CF in the Chapters: 1. Identify and train a Chapter staff person to spearhead your CF adult engagement efforts 2. Develop a brochure on Ways to Get Involved for adults with CF 3. Share the Ways to get Involved brochure with adults with CF 4. Have an adult with CF come in to address your staff and the Board/ Advisory Committee about living with CF 5. Include adults with CF as you collaborate with your CF Care Centers Kristin Dunn and Leigh Innocenti, Executive Director of the San Diego Chapter, co-chaired this committee. Northern New England s April 2015 Newsletter Greater New York s Ways to Get Involved Brochure. 2015

5 Mentoring Identified by the CF Adult Task Force as part of the 2013 Strategic Planning process, mentoring programs are viewed as beneficial in the healthcare field and are becoming more widespread. Although mentoring is happening organically in the CF community, there are few formalized programs. Initial research included a survey of CF care centers and of the community which demonstrated enthusiasm from both Care Centers and people with CF to develop these types of programs. AIM: To develop and test a model for an effective mentorship program that provides: Efficient delivery at the appropriate time of need Effectively addresses the expressed needs of the community Accessible & sustainable to all people within the CF community FOCUS: To support living with CF with an emphasis on sharing, experiences, skills, and the balance between quality of life and medical management. Recognize the knowledge of living with CF in the adult community Create a program that enables sharing of experience among the members of the CF community The Council has been a valuable source for feedback and knowledge for the overall goal of the program. Phase three, the pilot rollout phase, will begin in Council member Joan Finnegan Brooks, co-chair of the Mentoring Committee, hosted two focus groups via BlueJeans with other adults with CF along with fellow co-chair, Gerry Pandzik.

6 Volunteer Leadership Conference March 2015 As a way to develop new communication outreach that targets adults with CF in more ways than fundraising, the Foundation hosted the second virtual CF adult panel discussion at the Volunteer Leadership Conference in March. Kristin Dunn moderated an open discussion with two CF adult panelists, including future Council member Andy Lipman, via video. During the dialogue, panelists were open about overcoming challenges, infection prevention and control, motivation, and ways that they and other people with CF are engaged in the CF Community both with local Chapters and beyond. A total of 338 people watched the online streaming and there were over 500 people in the audience. Click here to watch the recording of Listening, Advocating, Helping

7 North American Cystic Fibrosis Conference October 2015 Andy Lipman bumped into Senior Vice President of Clinical Affairs, Bruce Marshall, in the hallway during the conference. Andy and his copilot, daughter Avery, were testing out this latest technology while talking with Bruce about Andy s role in the video for the third plenary focused on emotional wellness. Click here to read the blog post about this and other technology Live One-on-One The second annual Live One-on-One was a discussion around the normalization of depression and anxiety screenings during care center visits between Dr. Anna Georgiopoulos and adult with CF, Matthew James. The council gave their input on important questions that were asked during this session. Click here to read the blog post about the Live One-one-One session

8 Additional 2015 Insights CF Adult and Family Advisors (AFA) Three of the five new Council members were selected through their applications in the AFA. The CF Adult and Family Advisors (AFA) are a group of people within the CF community (including parents, caretakers, spouses, siblings and people with CF) who are interested in getting involved with the Foundation to provide unique perspectives about CF care, research, and quality of life. Those who are interested in joining are able to fill out a comprehensive survey discussing their fields of interests, overall goals, specific strengths, and available time commitments. Connection to CF Annual AAC Survey This survey helped us learn how we can facilitate our meetings and correspondence in a more efficient manner. We also asked the Council members to jot down some advice for the new members: Don't be afraid to speak up! This is a wonderfully open and generous group of people who really do care about what we have to say - each and every one of us. The purpose of this group is to get adult CF voices heard, which means that your thoughts, feelings, and ideas are valued and important to the future of the council and everything we do. Don't be afraid to voice your opinion...the Council was designed to have different voices. We need to hear all different perspectives in order to serve the greater CF adult community. Click here to view the 2015 AFA Annual Report In 2016 KC White, Kristin Dunn, and David Cobb will spearhead efforts to grow the AFA in a wider capacity across the CF community New Members Aaron Trumm Andy Lipman Ilene Hollin David Cobb Stacy Motenko

9 Increasing Collaboration Foundation Wide Advocacy Efforts Content Development for CFF Website Community Blog Posts The council gives input on website content and discusses upcoming featured topics regularly with the Communications team. Topics have included Managing Treatments and Therapies, Family Planning, and soon Nutrition.

10 Looking Forward to 2016 We found a way to communicate with each other and, in the process, created a meaningful virtual community - KC White