Our Health Management Program in the News!
By Molly | August 19, 2008
We’ve received some great national coverage and web publicity on our HMP with Centric.
Check it out!
http://www.bizjournals.com/stlouis/stories/2008/08/18/daily5.html
Topics: Uncategorized | 1 Comment »
Seeing a Lot of Pemphigus Patients-and Blogging!
By Molly | August 14, 2008
Here’s a blog referring to someone in KUALA LUMPUR : Malaysia who saw two pemphigus patients in one day. At least someone out there seems to know about this! http://zayye-anotherday.blogspot.com/2008/08/box-of-chocolate.html
She wants us to send chocolates, I think we will! Also if you have a chance visit her blog and add your comments and encouragement.
Topics: Coping, Doctors, Musings, News | No Comments »
Stories of courage: mountain lion attack survivor faces her fears
By Molly | August 14, 2008
This story brought me to tears: http://www.latimes.com/news/local/la-me-lion15-2008may15,0,5103614.story.
This woman was attacked by a cougar suffering severe damage to her face. “I could have curled up into a ball or gotten on with my life,” said Hjelle… it’s not easy, but I wanted to conquer my fears.”
Hjelle was taken by helicopter to an area hospital. After surgery, Hjelle felt helpless as the attack replayed in her mind. ‘It was like watching a horror movie…”
“as her wounds began to heal, Hjelle hopped on her mountain bike and hit the trails, gaining more courage with each ride…. I didn’t tell anybody about it for a long time,” she said. “But then I realized I needed to get over myself and admit to other people I have some fears I need to deal with.”
Here’s to getting on!
Topics: Coping, Hope, courage | 1 Comment »
Fundraising-the Board of Directors and You
By Molly | August 14, 2008
The IPPF continues to rely on funding from members of our P/P community — individuals and corporations with related interests. One of the primary ways that any nonprofit organization raises funds is through a network of connections and relationships with concerned people, the main result of which comes from the Board of Directors.
If you have talents building relationships and a passion to support the IPPF, read this persuasive overview of what makes an effective fundraiser-it’s easier than you think! Then perhaps consider joining the Board of Directors in helping the IPPF reach out to others. http://www.raise-funds.com/111203forum.html
One of the challenges for our disease in particular, is that when people initially contact us, they are too sick to participate much and only have energy to focus on their disease; after people manage their disease or go into remission, their involvement in the organization dwindles. There are lots of ways to give back with your time and energy, not just your money. If you’re feeling good now and you relied on the resources of the IPPF consider what you might do to share that with others.
Other Good Tips:
Boards are Important: http://www.raise-funds.com/exhibits/exhibit47.html
Sure, it seems scary: http://www.raise-funds.com/exhibits/exhibit50.html
Asking for the Right Amount:http://www.raise-funds.com/exhibits/exhibit59.html
Tips for Volunteers: http://www.raise-funds.com/exhibits/exhibit30.html; http://www.raise-funds.com/exhibits/exhibit31.html
Topics: Board of Directors, Fundraising projects, Hope | 1 Comment »
Am. Derma. Assoc. Response to NYT Article from 7/29
By Molly | August 7, 2008
The ADA gives its responses to the allegations — a inside peek, Interesting.
www.pemphigus.org/images/stories/pdf/AADBreakingNewsQuestionandAnswerDocument.pdf
Topics: Doctors, Medical Insurance, News | No Comments »
A Doctor’s Opinion on National Health Care
By Molly | August 5, 2008
Janet swears by how well the medicare system works, and now a doctor too!
http://www.medscape.com/viewarticle/577448?src=mp&spon=17&uac=121299PR
Topics: News, Uncategorized, related diseases | 1 Comment »
Supervising Non-Profits and Public Benefits
By Molly | July 30, 2008
The National Health Council, of which the IPPF is a member, has taken up congresses call to create higher standards of the efficiency and excellence in regards to nonprofit budgets. Read about their oversight at:
http://www.nytimes.com/2008/05/26/us/26tax.html?pagewanted=2&_r=3&sq=Stephanie%20Strom&st=nyt&scp=2
Topics: Board of Directors, Fundraising projects, Successes, Uncategorized | No Comments »
Dermatologists-more money and attention to cosmetics than disease
By Molly | July 29, 2008
This was a disturbing but not too surprising article from the New York Times talking about how high paying, high prestige “cosmetic” customers to dermatologists offices received better treatment, faster appointments, and more attention than people with skin related diseases, even those that may be life-threatening.
It scratched my cynical “scab” about how money directs the focus of everything.
Topics: related diseases | 6 Comments »
Recent ArticleAbout Treatment of Pemphigus
By Molly | July 29, 2008
Someone on the Email Discussion group passed this on to me:
http://skintherapyletter.com/2008/13.3/2.html
Topics: Clinical Trials, News, related diseases | 3 Comments »
Last Lecture - Advice for Living
By Molly | July 28, 2008
Last friday afternoon as I was driving home from work I heard the announcement that Randy Pausch had died. Many of you already know Randy and his Internet sensation, Last Lecture, one of the series of lectures exploring the legacy of values that one would leave knowing they were giving their “last lecture”.
Randy, who had pancreatic cancer, was truly giving his last lecture, and had in sight the legacy of leaving his wisdom and his video for his children. You may find Randy’s thoughts to be of inspiration, as are the understandings of many who are facing the exploration of what is really important in life. Here’s a link to Randy’s last lecture.
http://www.youtube.com/watch?v=ji5_MqicxSo
Topics: Hope, Musings, Uncategorized, change, courage | No Comments »
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