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| Upcoming Events |
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Baltimore Fun Walk for a Cure
November 24, 2007
Baltimore, Md.
Hub for the Holidays
November 30, 2007
Spartanburg, S.C.
5th Annual Update in Pulmonary Hypertension
November 30, 2007
Boston, Mass.
Pulmonary Hypertension: 2007 Update
December 1, 2007
Jacksonville, Fla. | |
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| Vol 8 /Number 23 |
November 19, 2007 |
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PHA SUPPORT GROUP LEADER GETS TWO AWARENESS MONTH PROCLAMATIONS! |
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When Mid-South, Tenn. Support Group Leader Barbara Thompson set out to get local officials to sign proclamations, she wasn't sure what to expect. But the outcome was tremendous! Both the Mayor of the City of Memphis and the Mayor of Shelby County signed proclamations to declare November 2007 as Pulmonary Hypertension Awareness Month. Says Thomson, "Wow, this was a cinch! I never expected this to be as easy as asking. I sent an email to each of our area's Mayor's offices."
 Barbara Thompson shows both county and city proclamations to her support group. These proclamations, each signed by the Mayor of that area, officially declare November 2007 as Pulmonary Hypertension Awareness Month. |
| THE FIRST SUPPORT GROUP LEADERSHIP INSTITUTE IS AN AMAZING SUCCESS! |
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13 Support Group Leaders Attend First Support Group Leadership Institute Held in Mid-Atlantic Region
On Saturday, November 3, PHA brought together 13 support group leaders from the Mid-Atlantic region for our very first regional Support Group Leadership Training. They came together face-to-face in PHA's office in Silver Spring, Md., to discuss a variety of issues affecting their work.
The forum provided an opportunity to share ideas, offer input, problem solve and network with other support group leaders. The meeting not only served as training for the leaders who were in the room, but the ideas and issues raised will be shared with the entire network of leaders nationwide. As you can see from the photos, we had a lot of fun!
Read Article
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| MORE THAN 700 PATIENTS AND 500 HEALTH CARE PROVIDERS ATTENDED PHA'S REGIONAL MEDICAL EDUCATION PROGRAMS! |
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 For the third consecutive year, PHA held regional Medical Education programs across the nation. More than 700 patients and 500 health care providers attended the events held in New York, Baltimore, Minneapolis, Los Angeles, Dallas and Miami. This year's programs, entitled Pulmonary Arterial Hypertension: Current Approaches and Future Expectations for Clinicians and Patients, were held in partnership with the University of Michigan Medical School and the Scleroderma Foundation.
One Baltimore attendee described the sessions as "encouraging, hopeful and helpful." Another commented that this was the "most informative info I've heard since my diagnosis."
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AWARENESS MONTH OPPORTUNITY
MEDIA CORNER: Your Story Can Help Others! |
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Awareness Month is a great time to write a letter to the editor of your local newspaper to share your story about PH. While normally letters to the editor are about an article the newspaper has printed, you can remind readers what their newspaper hasn't printed - yet. Letters to the editor are short, usually between 100 and 250 words, but if you use that space well, you can raise awareness in your area! Here are a few ideas to get you started:
- Open by informing them that it's Pulmonary Hypertension Awareness Month.
- Tell them about pulmonary hypertension - what it is and how it affects your life.
- Educate them by explaining why awareness is so important.
- If you still have space, share your personal story about having, or being diagnosed with, PH.
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| AWARENESS MONTH OPPORTUNITY
RAISE AWARENESS ABOUT PH BY LEAVING WORK EARLY! LEARN HOW! |
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How much would you pay to leave work an hour early? Think your co-workers would be willing to pay a little extra for this privilege while supporting a good cause? If so, check out PHA's brand new Our Workplace Has a Heart toolkit for ideas and instructions on  holding workplace PH-awareness raising fundraisers, including help with getting your event sanctioned by your HR department and even a recipe for chocolate chips cookies that is so good, they should be worth their weight in gold. (We don't call them Cha-Ching Chocolate Chip Cookies for nothing!)
To request a kit, or for more information about the easy ways your company can raise funds and awareness for PHA, contact Andrew at Andrew@PHAssociation.org or 301-565-3004 x116. |
| NEW CONSENSUS STATEMENT ON ACUTE VASODILATOR TESTING |
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| A new consensus statement is now available online on Acute Vasodilator Testing. Consensus statements are developed by the Consensus Committee of PHA's Scientific Leadership Council (SLC) and reviewed and approved by the membership of the SLC.
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| THE 4TH ANNUAL GEORGIA FUN WALK WAS A HUGE SUCCESS! |
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 The 4th Annual Georgia Fun walk raised over 12,000! Organized by PHA Board member Sally Maddox, the walk was held on October 27 at Drake Field in Peachtree City, Ga.
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 PH IN THE NEWS |
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Hearing Loss Warning Issued for Revatio
(PharmaLive) Rockville, Md. -- The FDA has received reports of cases of sudden decreases or loss of hearing following the use of PDE5 inhibitors, Viagra, Levitra, and Cialis for the treatment of erectile dysfunction and Revatio for the treatment of pulmonary arterial hypertension.
Pulmonary Hypertension Breakthrough
( Newsmax) -- A new gene-cell therapy procedure gives hope to victims of deadly pulmonary hypertension, which up to this time has had no satisfactory treatment.
2008 Young Investigators Award Program for Pulmonary Vascular Disease Research
Actelion announced its continuing support for young researchers with the 2008 Entelligence Young Investigators Award Program, a mentored, one-year grant-supported program for up to $75,000 now in its third year. The deadline for Letters of Intent is December 31, 2007.
Caring Voice Coalition Announces Availability of Online Application for Financial Assistance
(Caring Voice Coalition) Mechanicsville, Va. -- Caring Voice Coalition, Inc. (CVC), an organization which provides comprehensive support to chronically ill individuals, is pleased to announce the availability of an online method for patients to apply for its financial assistance.
Encysive Pharmaceuticals Announces Presentation of Sitaxsentan Data in Eisenmenger Syndrome At AHA Meeting
(Prime Newswire) Houston, Texas -- Encysive Pharmaceuticals, Inc. announced that open label observational data from Columbia University suggests that sitaxsentan (THELIN), a selective endothelin A receptor antagonist, may improve symptoms associated with Eisenmenger syndrome (ES). Read Article |
| NOW IS YOUR CHANCE TO GET MEDICARE PART D |
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Do you have Medicare Part D? Are you considering signing up or changing your plan?
The Medicare Part D enrollment period is open now, from Nov. 15 to Dec. 31. If you are considering changing your plan, this is the time you can do it! You may also want to ask your current plan about any changes in their formulary to make sure there are no changes to the coverage of prescriptions you take.
Changing a Medicare Part D plan can take a lot of time and research. You can go to Medicare's website and formulary finder to start working on this. Alternatively, many hospitals and pharmacies employ people who are trained specifically in helping you do this. Ask around to find someone near you.
Remember to bring a list of your current (and potential) prescriptions with you as you look into Medicare Part D plans. Also of interest, NPR story from Nov. 15, 2007. |
| PHA PROUD TO BE RECOGNIZED BY BBB WISE GIVING ALLIANCE |
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 This month, PHA successfully met the Better Business Bureau (BBB) Wise Giving Alliance's Standards for Charity Accountability. Voluntarily satisfying each of the Alliance's twenty standards is signified through a national charity seal, which was affixed to PHA's website, www.PHAssociation.org, and will be featured in our end-of-year fundraising appeal. The comprehensive evaluation process involved analysis of PHA's governance, effectiveness, finances and informational materials, in addition to other areas of accountability to the PH community. The standards go beyond what government regulators require.
According to the Alliance's website, "The goal of the Alliance seal program is to offer a highly visible accountability tool that will help inform donors, assist charities in establishing their commitment to ethical practices, and encourage greater confidence in giving." To help accomplish this, the Alliance produces in-depth evaluative reports on national charities based on the comprehensive Standards for Charity Accountability. PHA is proud to have received this recognition.
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| NOW IS A PERFECT TIME TO PURCHASE PH CARDS FOR THE HOLIDAYS |
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Why not send someone special a PH card for the holidays? The young artists who produced these cards are children diagnosed with PH or their siblings.
 Help PHA while you show your loved ones how special you think they are. You can even use them for a holiday Circle of Friends letter writing campaign.
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