Summer 2009

Dear Friend of the PNA,

Founded in 1992 by a group of pituitary patients, the PNA has grown to become the world's largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary/hormonal disorders. Our motto is "Patients First". Our mission is to improve the diagnosis and treatment of every pituitary patient, many of whom are still undiagnosed after many years of suffering.

I want to share with you an e-mail we recently received from a pituitary patient in Argentina:

“I have the very best news…I saw the neurosurgeon in my health insurance…A week after that I had the MRI and the diagnosis was absolute...I had a tumor and acromegaly. The surgery was scheduled immediately for Feb 6th and after 8 days of hospitalization I'm back home with almost everything under control. My blood pressure is back to normal, my blood sugar level is normal and the thirst and excessive urination disappeared already. I have lost about 18 lb. and a mild numb palate that I hope goes away is the only weird sensation I have. I have supplements of hydrocortisone at least for a month and next Monday I'll see an endocrinologist who's an expert in acromegaly for new test and a diet. And all this because of your guidance and prompt response. I had NO idea it was a neurosurgeon I had to see to be treated.

Thank you all and I only wanted to let you know that the web page was the tool that led me to you and everything happened in less than a month. Thank you, thank you, thank you!!!!”

The number of lives we touch at the PNA EVERY DAY is astounding. I am tremendously proud of the work we are doing on behalf of pituitary patients, their loved ones, and the health care professionals who treat them. Our recent successes include:

• In April, the PNA made a presentation to the Scientific Management Review Board of the National Institute of Health (NIH) about this issue – the first non-member organization invited to do so.

• To serve Spanish, French, and Portuguese-speaking pituitary patients and health care providers, we are translating critical information on our website into those languages and providing referrals to advocacy and support organizations in users’ home countries. Eventually, we want the website to be accessible worldwide in ten languages!

• We have had some excellent opportunities to educate the general public about pituitary disorders. For example, on June 23rd, 2009 our CEO, Robert Knutzen, appeared on the Today Show with patient Tanya Angus as she shared about her battle with acromegaly. (To view this segment, please visit the MSNBC website at: http://today.msnbc.msn.com/id/31502540/ns/today_health/.)

• We launched the Scott Hamilton Virtual Family Hormonal Health Center site in February 2009, and each month we now average more than 92,000 page views, 26,000 visits, and 22,000 unique visitors from an average of 126 countries. We are the top referral site on pituitary issues for the NIH and other federal agencies. We are constantly updating our information, responding to requests, and providing resources, referrals, and discussion forums for our website users. There is no other comparable website currently in existence.

We are the only patient advocacy organization currently doing this work, and I hope that you will support us and educate yourself about pituitary disorders by becoming a member and/or making a donation to PNA. Your membership will enable us to continue helping pituitary patients and advocate on their behalf, AND you will receive the following, members-only benefits at www.pituitary.org:

• Ask the Expert – Get knowledgeable answers to your burning questions from an endocrinologist or neurologist.
• Pituitary Support Bulletin Board – Experience a powerful sense of community with other pituitary patients, and get support for your treatment, mental outlook, and the overall recovery process.
• Touch Briefings E-Book: PNA is honored to collaborate with Touch Briefings to give PNA members free access to the online e-book versions of U.S. Endocrinology
• Informational E-mails: We keep our members informed with brief messages on pituitary awareness, news, updates, articles, and patient surveys.
• Members Library – Each month, we expand our Members Library by adding the latest in articles, surveys, and information on clinical trials.
• Highlights Members’ Articles and Archive – Our monthly electronic monthly magazine will include the Members’ Article of the Month, and the ability to access all past and present issues of Highlights in our Member Archive.
• Network Magazine Archive - Members can access all past issues of our quarterly publication.
• And coming soon – Member Chat and Online Seminars

I hope that you will want to get personally involved in educating and advocating for pituitary patients all over the world, by becoming a PNA member or making a donation. Please fill out the enclosed donation card and return it to us or donate online at www.pituitary.org. Thank you for helping us reach every pituitary patient who may be forgotten, abandoned, or worse yet, undiagnosed after many years of suffering.

Sincerely,

Robert Knutzen
CEO