PHANews 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.
NEWS
--Phase 3 Trials Find Ambrisentan is Safe and Effective for Patients With Pulmonary Arterial Hypertension: Presented at ATS
--UPDATE 1-Encysive Gets Canadian Approval for Hypertension Drug
ANNOUNCEMENTS
--2007 Innovations in Heart Failure and Pulmonary Hypertension, Pittsburgh, Pa.
--California PH Forum Registration Deadline Friday, June 15
--"PEER Network" for Remodulin Patients Launched
--PHA Job Openings
CONTEST
Win A Free 2008 Conference Registration!
PHA is looking for a theme for the 8th International PH Conference to be held in Houston, Texas, on June 20-22, 2008, and we need your help! No graphic design experience necessary -- Just send us your ideas for an inspiring theme that conveys our progress as a community in the fight against this awful disease and our continued efforts toward the ultimate goal -- finding a cure! One free conference registration will be awarded to the person who submits the chosen theme.
Towles Help in the Fight Against PH
When Roger and Deborah Towle's daughter Jocelyn was diagnosed with PH in 2002, Roger wanted to help her in her fight against this difficult disease. Roger started volunteering with PHA, and he joined PHA's Board of Trustees in 2004. Roger became PHA's Treasurer, a position he holds to this day. Roger and Deborah make generous annual gifts to PHA, but they wanted to do more. They were motivated to bequeath a portion of their estate to PHA in support of a cause they strongly believe in. Read full story
Dorothy Bradley Bequests Home to PHA to Support Research
Dorothy Bradley is PHA's first employee and the only PHA staff member in the Legacy of Hope Society. She was hired in 1999 as a part-time Office Assistant and continues to cover the phones and assist with administrative tasks. She explained, "I don't have anybody to leave my estate to, and I consider PHA to be part of my family. I talk with patients on the phone and I see how they are affected by this disease ... and I am impressed by the way they persevere and overcome. The funds from my home will go to support research so that one day, patients won't have to face this disease anymore. It was the biggest thing I could do." Read full story
Second Chance!
Join Conference Call on New PH Bill
This summer, a new PH bill will be introduced in Congress...you're help is needed to pass it! During August, visit your Members of Congress in local offices near you. Visiting with elected officials face-to-face is the most effective way to get their support. To learn more, join the second conference call Monday.
Monday, June 11 at 3 p.m. (EST)
Call 1-877--511-1607, use PIN 3564893
The call will be led by lobbyist Gavin Lindberg and PH patients with advocacy experience.
The 2007 web-based pulmonary hypertension CME & CEU program for medical professionals jointly sponsored by the Pulmonary Hypertension Association and the University of Michigan Medical School is now available online.
Online Community Provides Support PHA's message boards, listservs and chats connect our PH community across the globe, ending the isolation and providing support to PH patients and family, for both new and long-time survivors.
Online Community Announcements
Message Board Cleanup Frees the Boards
The message board cleanup of messages from before 2006 was succesful and the boards are moving much faster. Learn more
WE WANT YOU! Call for Message Board Advisory Committee Volunteers
We want to hear from you about how you think the message boards should operate and continue to function in a way that best serves the PH community. We are forming an advisory committee to help inform us about how to best upkeep the boards as well as to help us choose a new, improved message board tool. Contact Diane with your comments or to join the advisory committee at web@PHAssociation.org.
New Monday Night Online Support Group Chat a Success
Merle Reeseman reports: At one time there were 15 folks chatting at the same time, and we had a few who left then a few more joined in, so I would say a total of 18 or 19 participated in the chat. There were people on the chat from Ariz., Calif., Conn., Fla., Mich., N.Y., Ohio, Ore., Pa., S.C. and Va. Read Merle's full report
Friday Night Online Support Group Chat Officially Added to the Schedule
Mason Hoffman and Ellen Harris informed us that they've been moderating an online support group chat on Friday nights at 10pm EST (7pm PST). Feel free to join them Friday nights or join any of the other scheduled online support group chats throughout the week. View chat schedule
Chat Tool Allows Realtime Chatting Anytime
Did you know that the online chat can be used to chat with anyone, anytime? If you have an online friend from the message boards or listservs and think it would be great to chat online in realtime you can invite them to chat. Or you might be having a compelling discussion on the boards or the listservs but think it would be easier in realtime chatting. Whatever the reason, the tool is there for you anytime, not just for the scheduled online support group chats. Start chatting now
Online Community Initiates Educational Ideas
Many who contacted us about the message board cleanup were concerned about the wealth of knowledge provided by the online community disappearing. While we're hoping to repost the old messages when we upgrade our tool sometime in the future, we wanted to take this opportunity to encourage the online community -- from the listservs and chats as well as the boards -- to submit ideas from your online discussions for dispersement to the general PH community. You all have great ideas and are a font of information -- we'd love for the PH community as a whole to benefit from that experience. Send your ideas to Diane at web@PHAssociation.org.
Phase 3 Trials Find Ambrisentan is Safe and Effective for Patients With Pulmonary Arterial Hypertension: Presented at ATS
The vasodilator drug ambrisentan was found to be safe and effective for patients with pulmonary arterial hypertension in a pooled analysis of 2 phase 3 trials, researchers reported here at the American Thoracic Society 2007 International Conference. Read article
UPDATE 1-Encysive Gets Canadian Approval for Hypertension Drug
"Thelin has demonstrated a unique benefit for individuals who have developed (pulmonary arterial hypertension) as a result of a connective tissue disease, such as scleroderma," said Janet Pope, M.D., Professor of Rheumatology at the University of Western Ontario, as quoted by the company in its statement. Read article
ANNOUNCEMENTS
2007 Innovations in Heart Failure and Pulmonary Hypertension, Pittsburgh, Pa. September 28-29, 2007
This CME course is intended for cardiologists, cardiothoracic surgeons, internists, pulmonologists and other health care professionals who have direct responsibility for, or interest in, advanced cardiovascular patient care. Sponsored by Allegheny General Hospital, in partnership with the Pulmonary Hypertension Association. Save the date flier (PDF)
California PH Forum Registration Deadline Friday, June 15 Message from the California PH Forum Committee, caphforum@sbcglobal.net The California PH Forum co-sponsored by PHA is coming up on June 22-24 and offers an enriching educational experience as well as amazing support opportunities. As the deadline for registration is June 15, we would like to save the places that are left for you. Please contact us right away if you are still thinking of attending.
The registration fee of $100 ($150 for medical professionals) includes two dinners, one lunch and snack breaks. The Forum will have several world renowned doctors presenting workshops as well as Support Groups and Q & A sessions with nurses. View complete program information and register now!
"PEER Network" for Remodulin Patients Launched
PHA hears of new resources and services for patients from time to time. We don't endorse any over another, but we DO share this information with you to check out for yourself. There are several programs out there to help patients find support with specific treatments. For example, you've probably heard of Actelion's Sure Steps program for patients participating in their Tracleer Access Program (for more info www.Tracleer.com, 1-866-682-7873, www.ActelionSureSteps.com).
There's a new one that has JUST launched early May. United Therapeutics has come out with a new service for patients on Remodulin called the “PEER Network" = Patients Exchanging Experiences with Remodulin. The goal of PEER is to provide an opportunity for people who are considering or who have recently started Remodulin to talk with an experienced Remodulin patient (they call them PEER Mentors). These mentors are people who are receiving Remodulin and volunteer their time to communicate with others about their Remodulin experience.
For Individual Patients: The way it works is that if a patient wants to talk to a PEER Mentor, they can visit www.PeerNetwork.net, select a PEER Mentor and then use the website to send a private message to the mentor. If you have been on Remodulin for a while and are interested in becoming a PEER Mentor, contact the PEER Network program at toll-free: 1-866-505-7337 (PEER) or email info@peernetwork.net.
For Support Groups: You can also bring a PEER Mentor to speak to your support group about the practicalities of receiving Remodulin if you want. We’ve been told that they do not offer medical advice. To request a PEER Mentor to speak at a meeting, just contact the PEER Network program at toll-free: 1-866-505-7337 (PEER) or email your request to info@peernetwork.net.
PHA Job Openings
PHA has 3 current job openings - Senior Administrative Associate, Director of Finance, and Assistant to the President. If you or someone you know is looking for employment, we encourage you to check them out. Review PHA job openings
The
information provided on the PHA website is provided for general information
only. It is not intended as legal, medical or other professional
advice, and should not be relied upon as a substitute for consultations
with qualified professionals who are familiar with your individual
needs.
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