2001 Archives
October 4, 2001: Marfan on not only ER but also Portland's KGW Channel 8 too!
As we all waited for the "ER" episode, we had all but given up hope of our NBC affliate doing a local segment as a followup, especially after less than encourging phone call I had with them on Wednesday, but Laurie Moyer, our Vice-President, got a call from KGW late this afternoon to do a segment for the 11 o'clock news right after the show! They were also able to get Lynn Sakai from OSHU to appear as well. It was well done, and we are very proud of Laurie, her daughter Alyissa, and Lynn Sakai. Good Job!
September 30, 2001: Marfan on "ER"!
It's almost here. The most exciting event that we have all been privilaged to be a part of. Marfan syndrome will be part of an episode of NBC's hit show "ER" on October 4th, barring any more unforseen pre-emptions. Encourge your friends and family to watch. If you would like to be avalible for local interviews, please contact Eileen Mascale through the National office at 1-800-8-Marfan. It is VERY IMPORTANT that ALL media related questions / contacts go thru Eileen.
September 20, 2001: Attack on America
The OCNMF extends it's deepest sympathies to the people of New York, Washington DC, and Pennsylvania who are suffering after this horrible attack on America. Thankfully all our representatives at the national office in NY are safe. Although many Marfan affected can not donate blood due to post surgical heart medication, we encourge all that can to volunteer in whatever way possible to help with the relief effort. If you have not had major surgery or other complications and want to donate blood, we strongly encourge you to check with your doctor and the Red Cross first.
August 19, 2001: National Marfan Convention Update.
The president, vice-president and interum treasurer were able to make it to the national convention in Seattle Washington, and along with about 15 other Oregon members. Along with a good time, we were able get a lot of valueable info and some very exciting news.
July 13, 2001: The Oregon Chapter has moved!
Unfortunately we were unable to hold on to our phone # and email, so please note these have changing.
June 10, 2001: From the desk of the President - OCNMF
First, the good news. Daniel has recovered from his surgery to the point he can do basic housework, and lifting restrictions are gradually being lifted, but he still tires easily. His blood pressure has been better, but still has not stayed nearly as low as it should be.
He has developed arthritis in his knee, and that has slowed his recovery. He should be in physical therapy soon for the knee.
Now for the not so good news. It has been a very frustrating spring. Along with an uphill battle with Social Security and family issues, I have been very discouraged by how little the Chapter has accomplished this spring. I blame myself in part, as I have not been able to find near enough hours to get things done. If I could afford to quit my job and work full time on the Chapter I would in a heartbeat, but unless this were to turn into a paying position, I do not see that happening. There are so many good ideas and projects needing attention, but Laurie and I CAN'T do it ourselves! Seattle is just around the corner, yet with less than $400.00 in the chapter fund, we can not commit to sending either Laurie or myself, and neither of us have the funds personally to afford it. I have a contact name into the Portland Fire Basketball team, but we need more business contacts to persue. Come on guys - Just 3-5 hours a week would help us soo much. Please consider voulnteering. See below to find out what help we need.
A mailing should be going out soon. It will have a questionaire, newsletter and new address info. Please respond as quickly as possible.
March 26, 2001: The OCNMF is 10 years old!
Watch for the link to the left to go active for information about upcoming anniversary activities.
March 26, 2001: All 2000 entries have been moved to 2000 Archives.
February 1, 2001: The Marfan Syndrome was featured on the NBC Today Show on February 2, 2001.
Go to the National Marfan Foundation site to view this interview if it is still avalible.
