2008 Awareness Month Sponsors
- Actelion Pharmaceuticals US, Inc
Fifth Annual Congressional Luncheon
Briefing Books
"You Can Make a Difference Brochure," 2nd Ed.
Turning Silver to Gold: The 2008 Matching Fund, co-sponsor
2009 Community of Hope Calendar
SLC / PH Resource Network Executive Committee Meetings, co-sponsor
Pocket-Sized “10 Things to Do” Cards
- Pfizer, Inc.
Turning Silver to Gold: The 2008 Matching Fund, co-sponsor
e-Learning Events: Online Q&A Chats, Conference Call Discussions, and Webinar Presentations, co-sponsor
PH Clinicians & Researchers and PH Resource Network Membership Promotion
Action Kits
Website Makeover, co-sponsor
- Eli Lilly and Company
e-Learning Events: Online Q&A Chats, Conference Call Discussions, and Webinar Presentations, co-sponsor
- Gilead Sciences
Special Events Seed Grants
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CuraScript, Inc.
Awareness Month Posters
- United Therapeutics Corporation
PH On-Demand with Kirsten & Elise
- Lung Rx
Membership Scholarships for PHCR and PH Resource Network
After former Congressman Tom Lantos, a long-time champion of the PH community, passed away in February 2008, PHA began working to re-introduce our bill in Congress as the Tom Lantos PH Research and Education Act of 2008. This bill has been crafted with strong potential to move from committee onto the House floor for a vote. The 2008 Congressional Luncheon will be an invaluable tool for connecting the PH community with Senators and Representatives. Luncheon speakers will educate Members of Congress and/or their staff about PH from the patient, caregiver, and physician perspectives, and encourage co-sponsorship of the new bill.
Briefing Books
PH advocates communicate with their Members of Congress in a variety of ways. One of the most empowering and effective methods for this communication is through face-to-face visits. Participants need high impact leave-behind materials that elected officials and their staff can return to after the visit concludes. Briefing books are this leave-behind piece. They include professionally presented fact sheets about PH and its impact on a variety of communities as well as the details of PH legislation that Members of Congress are encouraged to co-sponsor.
“You Can Make a Difference Brochure,” 2nd Ed.
First created and distributed in 2006-2007, the PHAction: You Can Make a Difference brochure highlights two rapidly expanding PH awareness programs: The 435 Campaign and the PHAware Campaign. Now to be updated and reintroduced, this brochure can act as a tool for engaging and empowering the PH community in the areas of media awareness and legislative advocacy.
Turning Silver to Gold: The 2008 Matching Fund
When donors know that the impact of their gift will be doubled or tripled thanks to matching gifts, their motivation to support PHA — which is already significant — increases considerably. Co-sponsors of this initiative will continue to help motivate PHA’s constituents by matching their donations during our 2008 campaign.
2009 Community of Hope Calendar
After two years of producing our Community of Hope calendar, we can say that it’s a big hit! Each page features a photograph of members of our community, tips for living with pulmonary hypertension and inspiring quotations from PHA members. It also features a calendar of PHA and medical/scientific meetings, a review of PHA services and resources and other interesting and useful information about PH and PHA.
SLC / PH Resource Network Executive Committee Meetings
Up until 2004, PHA’s Scientific Leadership Council (SLC) only met for an hour session every two years at PHA’s International Conference. When PHA hosted the first full day meeting of the SLC in 2005, the value of convening this body quickly became apparent. In 2006, PHA added semi-annual planning meetings of the PH Resource Network executive committee to this co-sponsorship and achieved similar planning benefits. Both the SLC and PH Resource Network continue to be vital structures within PHA largely thanks to the work accomplished at these in-person meetings. Co-sponsorship supports the 4th quarter meetings in 2008 and the 1st quarter meetings in 2009.
Pocket-Sized “10 Things to Do” Cards
In 2006, PHA produced a flier insertion for our brochures, titled “Ten Things to Do If You’re Diagnosed with PH.” This medically reviewed single-panel flier has proven invaluable both as a brochure enhancement and as a stand-alone piece for distribution to patients and families at support group meetings and special events. In 2007, PHA further expanded upon the potential of this resource by producing them in a smaller, wallet-size format that was widely distributed, including at the 2008 Conference in Houston.
e-Learning Events: Online Q&A Chats, Conference Call Discussions, and Webinar Presentations
Co-sponsorship of this initiative supports 12 monthly e-Learning Events for the PH community through remote event technologies, which have the potential to reach participants from across the globe. E-Learning Events will provide support and information for all of our various communities -- including our medical professional sections, PH Clinicians and Researchers and PH Resource Network. All three types of remote events will allow participants to interact in real-time with panel speakers and with each other. Online moderated Q&A chats allow participants to submit questions for expert panelists in advance and chat electronically during the event, conference call discussions allow participants to interact verbally over the phone, and webinars allow participants to view a presentation on their computer as well as interact over an electronic chat tool and through the phone. The upcoming schedule can be viewed at www.PHAssociation.org/Classroom/.
Special Events Seed Grants
Thanks to this sponsorship, in 2009 PHA will be able to offer 15 seed-grants of up to $1,000 each for the top volunteer special events proposals submitted. Special event organizers send drafts of their tentative event plan descriptions, itemized budgets detailing how they would use the seed-grant, and goals for fundraising. These grants allow first-time special event coordinators across the country to become organizers and leaders in the fight against PH, while raising money to support PH awareness and research.
Awareness Month Posters
Our Awareness Month poster has been a huge success since it was introduced, listing PH symptoms and PHA resources. Volunteers post them in doctors’ offices, libraries, and community centers nationwide.
PH Clinicians & Researchers and PH Resource Network Membership Promotion
This mailing will reach over 2,500 physicians and nurses in our database promoting PH Clinicians and Researchers (PHCR) and PH Resource Network, encouraging their participation in Awareness Month and other PHA activities. We will continue to use the mailing to remind them of available free and low cost materials PHA is able to provide for them and for their patients. The mailing will also include an insert encouraging the formation of support groups through treating physicians and nurses. In addition, 250 Survival Guides will be distributed at medical conferences and patient education sessions, and 250 to medical school libraries.
Action Kits
Each year, action kits are a sought-after tool during Awareness Month. The kits prepare even the most novice member of the PH community to take an active role in Awareness Month through awareness-raising, fundraising, and advocacy. This hallmark Awareness Month resource has been redesigned for 2008, and includes updates to reflect new opportunities.
Website Makeover
With well over 10,000 pages, www.PHAssociation.org is continuously evolving to the point that we are in need of a restructuring. Clean and professional web design, both server-side and client-side, is crucial for the presentation of easily retrievable content. This co-sponsorship helps support an overhaul of PHA’s website to include new navigation, design, features and technology.
PH On-Demand with Kirsten & Elise
This 30-minute podcast, produced by PH patient Kirsten Larson and her company Periwinkle Films, features valuable information for the PH community, including a physician discussion, followed by a patient journey and concluding with answers to correspondence and a thought from Kirsten. Kirsten filmed the first two segments of this innovative podcast at PHA’s Conference in Houston, available for previewing at www.phodcast.org/phodcast.
Membership Scholarships for PHCR and PH Resource Network
This sponsorship helps assure that physicians and allied health professionals working in nations where pay is low will not be excluded from membership in PHA’s two healthcare professional associations simply because of an inability to afford dues.
