PHA News Archive - April 27, 2007

Vol 8, Number 9		April 27, 2007
PHA News is an e-mail newsletter from the Pulmonary Hypertension Association covering PH related topics.

PHA News Editor - Sally Maddox skmaddox@bellsouth.net
Contributing Editors - PHA staff
reaching over 6300 subscribers
www.PHAssociation.org

PHA News is meant to give a picture of recent events and activities affecting the life
of the PH community. This compilation should not be viewed as endorsement of the
information provided or its accuracy.

		Topics For This Issue
	HEADLINES --TAKE ACTION: Help Prevent Genetic Discrimination --Stamford, Conn. and Central Florida Support Groups Provide Support & Information --Tax Saving Opportunity Is Knocking: Your IRA Is the Key NEWS --New Company Handpaints Children's Shoes And Donates % To Charity In Memory Of Daughter --12 PH Families Join Forces To Raise Awareness of Pulmonary Hypertension --Teen Makes Film About Her Life-Threatening Condition ANNOUNCEMENTS --ATS Holds First Annual Patient-Family Gathering --A Call for Web Surfers: Help Us Improve PHA Online --Order Free PH Resource Network Symposium Save-the-Date Cards for the PH Nurses in Your Life

TAKE ACTION:

Help Prevent Genetic Discrimination The Genetic Information Non-Discrimination Act (GINA) just passed in the House of Representatives with an overwhelming 420-3 vote. The PH community has worked with other health organizations to support this bill in the past and now you can help it pass the Senate. Genetic screening, counseling, and testing are important options for the PH community, especially for those with a history of pulmonary hypertension in their families. GINA sets strict standards for the use and disclosure of genetic information and imposes penalties against companies that violate these provisions. Now, GINA is working its way through the Senate. Urge your Senators to co-sponsor GINA, or thank them for their support

Highlights from the PH Community:

Stamford, Conn. and Central Florida Support Groups Provide Support & Information Stamford, Conn. held their first support group meeting this month. Support Group Leader and Founder Neeta Pai provides a moving report on the inaugural meeting and her journey to form a support group. Read Neeta's report and view pictures Central Florida's Robert Tash reports on their first quarterly meeting of 2007, which included information on Medicare Part D. Read Robert's report and view pictures We'd like to hear from you as well! Send us reports or just blurbs and pictures on your local support group activities and other PH stories and events. Or if you feel more comfortable giving a verbal report that works too! We will make it web-ready ourselves. Be sure to get permission from participants before using their names or sending us their pictures. Contact Diane with your reports -- written or verbal, long or short -- at web@PHAssociation.org or 301-565-3004 x119.

Tax Saving Opportunity Is Knocking:

Your IRA Is the Key Tax Day this month may have gotten you thinking about ways you can get more out of your tax return next year. Well, if you're looking for the most tax-effective gift to make to a charitable organization, your individual retirement account (IRA) may very well be the best choice. The Pension Protection Act of 2006 presents a new giving opportunity. The law allows individuals aged 70½ or older to make gifts now to qualified charitable organizations like ours using funds transferred directly from their IRAs. Learn more

NEWS

New Company Handpaints Children's Shoes And Donates % To Charity In Memory Of Daughter Pulmonary Hypertension (PH) took her life at the tenant age of 3 ½, yet the memory of Emma Cusatis and her fight to cure PH lives on in each pair of shoes painted and sold by her mom Jane Perillo. Jane and her company, Snanimals, are proud to announce that they will donate 5% of the online sales of these products, and for a new line of Cure PH items she'll donate 20% of online sales to the Pulmonary Hypertension Association to help in the search for a cure. Read article | Order Snanimals 12 PH Families Join Forces To Raise Awareness of Pulmonary Hypertension (United Kingdom) During PH Awareness Week, PHA-UK and its members are conducting a number of initiatives to try and boost awareness of the condition. A series of short films has been produced in conjunction with 12 PH patients across the UK by respected TV documentary maker Alan Howard and Producer Paul Pennington to highlight the impact that PH has on their lives. These short and powerful films can be accessed via the PHA-UK website. Read article | View videos | Learn more about PHA's international partners Teen Makes Film About Her Life-Threatening Condition (United Kingdom) Lyneham teenager Stacie Pridden is juggling her GCSE revision this week in order to raise awareness of the potentially fatal disease she has lived with since birth. The 16-year-old, of Britannia Crescent, has made a film with the help of documentary maker Alan Howard describing the disease and the impact it has had on her life. Read article

ANNOUNCEMENTS

ATS Holds First Annual Patient-Family Gathering Breathing Better with the ATS May 19, 2007 The first annual patient-family gathering 1:00 p.m. - 4:00 p.m. PARC 55 Hotel 55 Cyril Magnin Street San Francisco, Calif. RSVP to Karen Belgiovine (212-315-8640) by Thursday, May 10. Learn more (PDF) A Call for Web Surfers: Help Us Improve PHA Online PHA is looking for people from the community to surf sections of PHA’s website to proofread web pages and check the validity of links. Advise us of any corrections to be made and provide feedback on what works well and what doesn’t. Make suggestions for additional content the PH community might find interesting. Surfing can be done as you have free time and doesn’t have to be done all at once. We want a site that best serves the community and you can help us do that. Sign up online or contact Diane at web@PHAssociation.org or 301-565-3004 x119 to get started. Order Free PH Resource Network Symposium Save-the-Date Cards for the PH Nurses in Your Life The PH Resource Network is holding their biennial symposium October 11-13, 2007. The first 300 eligible registrants get free registration so help us spread the word about this unique networking and learning event for allied health professionals. Order your free Save-the-Date cards online or print them out (PDF).

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