Skill Building Workshops
The Skill Building Workshops are staff and volunteer-led informational seminars designed to help attendees enhance or learn new skills that can be used in the fight for our shared cause. These sessions will take place at two different times on Friday, June 22.
*All speakers, topics and meeting groups are subject to change.
Creative Connections: Tips for Networking During (and After!) Conference
Presenters: Debbie Castro, PHA Director, Volunteer Services; Kim Ford, DC and Silver Spring Capital Breathers PH Support Group Leader; Sally Maddox, Atlanta-region PH Support Group Leader
Get tips on how to maximize your time and connect with other patients during Conference. Learn how to find a local support group or start your own group once you return home. Leave this session with a greater understanding of how to find patients in your community and how you can learn from others to enrich your life after Conference.
From Your Hometown to Capitol Hill: Become Your Own Advocate
Presenters: Dane Christiansen, PHA's Washington Representative; Joy Gore, 435 Campaign Member; Elisabeth Williams, PHA Grassroots Campaigns Manager
In the PH community, powerful change begins with a few strong voices. No matter what your experience level or physical ability, you have what it takes to make a difference by educating your elected officials. You'll learn the basics from expert advocates and easy steps you can take to become an advocate for the PH community. Expect to leave this session with the knowledge, tools and inspiration to educate and build relationships with your elected officials.
Creativity for the Community: Exploring the Lantos Community Service Awards
Presenters: Mollie Katz, PHA Vice President, Community Engagement; Previous Lantos Award Winners
There’s almost no limit to what members of our community do on behalf of others when they raise awareness or find creative ways to support patients and family members. Hear from a few who have received support to put their ideas into action with a grant from the Tom Lantos Innovation in Community Service Awards program. Supported by Gilead Sciences, Inc., this program has enabled the members of the community near and far to get the word out about PH and make life better for patients, young and old.
Harnessing the Power of Your Online Social Networks Presenters: Alex Flipse, Facebook PHriend, Tweeter; Diane Greenhalgh, PHA Director, Web Services; Pam Pedersen, e-Advocate, Facebook PHriend; Sean Wyman, Facebook PHriend, Tweeter, Blogger, YouTuber When you share a meaningful message online, it has the potential to go viral! A message you create could easily be shared with your friends and family and on to their network of friends, and so on. Learn from PHers about how they use their personal PH connection to spread awareness far and wide through social networking. Whether you want to share through your email contacts, Facebook, Twitter, or other social networks, join us to hear lots of great ideas for raising awareness online and to get connected with resources that make sharing easy.
Presenters: Merle Reeseman, PHAware Campaigner; Jessica Sanchez, Reporter and Anchor, WKMG-TV Orlando; Elisabeth Williams, PHA Grassroots Campaigns Manager
The most effective media coverage about PH includes personal stories – your stories. Hear from the experts, media professionals and PHers like you, about the advantages of raising awareness through the media and how you can embrace them.
Put the Special in Special Events
Presenters: Nicole Cooper, Vision of Hope Gala, Md.; Leslie Mahaney, PHA Special Events Program Associate; Jessica McKearin, PHA Associate Director, Special Events; Jeannette Morrill, New England PH Forum & Swinging for a Cure Golf Tournament, Maine; Amy Piazza, Rolling PHor a Cure Bunco Tournament, Fla.; Joanne Sperando-Schmidt, New York Fun Walk, N.Y.
Thinking about taking your PH community involvement to the next level? PHA's Special Events program supports volunteer-organized fundraisers throughout the country — and events help support cutting-edge research, drive patient programs and increase public understanding of PH! In this session, meet a panel of our current volunteer event planners, learn the ins and outs of resources PHA provides to event organizers, and engage in hand-on activities with our expert panelists.
Words (and Blogging!) for Wellbeing
Presenters: Becca Atherton, PH Patient, Pathlight Contributor & Active Blogger in the PH Teen Community; Ellie Falaris Ganelin, PHA Design & Publications Associate; Megan Mallory, PHA Associate Director, Publications; Kiara Tatum, PH Patient, Support Group Leader & Co-coordinator of the Generation Hope Blog
Medical research links creative endeavors, such as expressive writing and artwork, to reduced symptoms and improved health. This session will provide you with ideas, prompts and tips regarding writing and other creative endeavors for your own health, including sharing your own work through blogging. Explore the creative possibilities with us, and please feel free to bring your own writing and artwork to share with the group!