2015 Legislative Conference & Lobby Day
FHI 360, 1825 Connecticut Avenue Northwest, Washington DC
Tuesday, February 24, 2015
(Click on the linked titles to view the presentations)
9:15 – 9:30 am Welcome – Overview of the Week
Conference Moderator: Dean Suhr, Genetic Alliance
9:30 – 10:10 am Overview of the 114th Congress
Congress After the Election and a Health Policy Forecast, Joanne Kenen, Health Care Editor, Politico
Congressional Committees That Shape the Future of Health, Nick Mannetto, Principal, FaegreBD Consulting
10:10 – 10:40 am Know Your Lobbying Rights, Siobhan Rausch, Partner, Hogan Lovells
10:40 – 11:40 pm Avenues for Impact
Regulatory Joel White, Founder & President, Horizon Government Affairs
12:10 – 1:30 pm 21st Century Cures Initiative
The Path to 21 Century Cures – Carly McWilliams, Professional Staff – Subcommittee on Health, House Energy & Commerce Committee
OPEN ACT HR 971 (Orphan Product Extensions Now Accelerating Cures & Treatments) – Saul Hernandez, Legislative Director, Office of Rep. Butterfield (D-NC)
CURE (Compassionate Use & Reform & Enhancement) Act HR 909 (Expanded Access) –Andy Taylor, Legislative Director, Office of Rep. McCaul (R-TX)
Dormant Therapies/MODDERN – Eric Gascho, Assistant Vice President for Government Affairs, National Health Council
Advancing Research for Neurological Diseases Act HR 292 – Jennifer Sheridan Palute, Policy Director, Parkinson’s Action Network
1:30 – 2:10 pm Prepping for your Hill Meetings
Lobbying Tips & Overview of Schedules Stephanie Vance, Owner & Founder, Advocacy Associates
Giving your two minute personal story – Kristine PJ Caalim, Founder, Zequing For a Cure
A Symbol for the Rare Disease Community: Gene Ribbons – Carrie Ostrea, Director of Advocacy, Global Genes
Leave behinds & the Caucus Ask – Andy Russell, Associate Director, EveryLife Foundation for Rare Diseases
2:10 – 2:40 pm Break & Distribution of Hill Day Schedules
2:40 – 3:30 pm Break-Out Skill Training Workshops
Starting your own Non-profit to Grow your Advocacy Impact –Barbara Lavery, Vice President of Strategic Alliances, Global Genes Project & Mike Illions, Vice President, Pediatric Hydrocephalus Organization
- Tips and tools for getting your rare disease organization to the next level. Learn about obtaining 501c3 status, creating a mission, vision, and a board of directors. Essential skills for any aspiring organization.
Polish & Practice your Presentation Pitch – Joe LaMontain, Vice President, Reingold Inc.
- Learn about persuasive and effective communication for maximum advocacy impact. Get tips for making a lasting impression and laying the groundwork to build a first-time meeting into a lasting relationship.
Introducing Legislation – Julia Jenkins, Executive Director, EveryLife Foundation
- Hear about the do’s and don’ts for introducing legislation, coalition building, and how to move a bill through the legislative process.
Social Media Advocacy – Joel Cohen, Non-Profits, Politics & Advocacy, Facebook
- Learn some insider tips for leveraging social media to raise awareness and build an action network for your cause.
3:40 – 4:30 pm State/Regional Break-Out Sessions Practice Meetings
4:40 pm Closing Remarks
5:00 pm End Conference