December 28, 2000: Saddly word has come to me that a young man, 18 years old, has died suddenly of undiagnoised Marfan's related heart problems. Details are still sketchy. The chapter will express our condolences to the family as more info becomes avalible. December 20, 2000: The Interum Treasurer will be having surgery on his aorta on 12-28-2000 at OHSU in Portland. Click on President's Journel for updates. December 16, 2000: From the Desk of the President - OCNMF As some of you may know, the Interim Treasurer, Daniel Moore, (aka - my husband) has developed a rapidly expanding progression from dilation of the aortic root to an aneurysm, and will be having surgery at OHSU on December 28, 2000 to replace his aortic valve, accending aorta, and aortic arch, as well as bypass a 70% clogged artery. As unexpected and a scary a time as this is for both of us, I would like to try to use this time to help you and all the members of the Oregon Chapter of NMF. Although we have had a few meetings, and put several projects on the drawing board, things are progressing along at a snail's pace. I take part of the blame as I know there are times I could be working on Marfan's work and chose to other things. I will try to get better. A survey to determine how Marfan's specifically affects our Oregon membership, what resources they would like us to develop, what projects they feel would best advance our mission statement, and get a better idea of who is interesting promoting the cause of Marfan's here in Oregon is 85% complete. Watch for it soon! Traffic through the Oregon chapter website is going very well, with about a 100 hits a month. We had our 1000th hit a week ago! Thanks for spreading the word! I have a friend from work that is volunteering to start translating some of the site to spanish for "The Spanish Outreach Project", and another who may be able to translate it into Korean. Attempts to get a written newsletter completed to reach those not online has been very slow going. Does any one want to help put it together as Editor? I'm average 2 - 4 calls a month about Marfan info on the Oregon Chapter number, and I try to follow-up as best I can, but as several of you can attest - it has been hit and miss. Anyone interested in becoming Secretary? There are many projects on the drawing board. Unfortunately most are hampered by a lack of funds. Fundraising has been relatively quiet, with only a presentation in Eugene to the Eagles Auxiliary for their consideration as sponsor to the OCNMF as one of their charities for 2000 - 2001 in August 2000. A few have paid their annual $10.00 dues for this year (Thanks!), but we have not as yet pushed a dues drive. Of course those that cannot pay will not be expected to, but many are able. If we can even collect $10.00 from 50 families, we will rejuvenate the state fund by $500.00. This could pay for most of the printing and mailing costs for 1 year. In addition, with big companies like NIKE, Intel, HP, Janzen, among others here in Oregon we have a huge potential to help National in getting the kind of money needed to do more research, as well as help here locally. Anyone interested in becoming Fundraising Coordinator or Treasurer? As we start to get the word out about Marfan's and find previously undiagnosed cases, a support system becomes really important in order to cope with all that Marfan's brings. This will become even more evident now that the Oregon School Activities Association high school sports pre-participation exam guidelines for the year 2000 have been revised to include several questions and specific criteria for doctors to watch for that might help to find undetected cases of cardiomyopathy, Marfan's syndrome, or other cardiac related conditions that occasionally cause premature deaths, especially in athletes. Inevitably more cases of Marfan's will be discovered, and we need a support system in place to help them cope with the diagnosis. Daniel & I are personally lucky to have a very good network of family and friends, but all except Laurie Moyer (OCNMF Vice-President) are not Marfan's knowledgeable. We still have lots of questions and few to talk to about what to expect after the surgery. It must be even worse those who have not yet been diagnosed and will face our same fate in the future. It is suspected there may be as many as 100 - 300 undiagnosed Marfan's  affected in Oregon. We need to be ready for them, as well as the 250 or families currently on the mailing list. Would anyone consider stepping up as Support & Outreach Coordinator? Many are asking for lists of medical providers familiar with the medical concerns of  Marfan's, as well as legal councilors who are compassionate and knowledgeable about dealing with the disability claims, and insurance issues often encountered. Would anyone care to act as Resource Coordinator? We had a reporter who was willing to do an article for Channel 2, but never followed up. Would any one consider being a Media Liaison? With Have-a-Heart just around the corner in February, and the national convention in Seattle only 8 months away, we need suggestions, volunteers, and your support to help jump start us. We appreciate all your well wishes in the weeks to come, but more that I am going to try to turn this into a good thing for all the Oregon Marfan's members. I will be looking for laptop to occupy my time in the hospital, and hope to get some real work done. Any suggestions will be welcome. We want to come to Seattle next summer with many accomplishments, and to make you all proud. We are hoping to see most of you there and want to make the Oregon Chapter one of the region's strongest! Wishing you a happy holiday season, and a joyful new year! December 12, 2000:  The OCNMF Page celebrates it's 1000th hit since it's launch in February of 2000! We are averaging 100 hits a month now. August 18, 2000:  The Oregon School Activities Association school sports pre-participation exam guidelines for the year 2000 have been revised to include several questions and specific criteria for doctors to watch for that might help to find undetected cases of cardiomyopathy, Marfan's syndrome, or other cardiac related conditions that occasionally cause premature deaths, especially in athletes. We are pleased to see the Oregon School Activities Association taking this positive step that will hopefully save lives.  Click here >>> OSAA to read the Kudo's letter to the OSAA or to view the new guidelines.

April 13, 2000:  Jennie Logsdon, one of our members from Oregon coast, appeared in the Oregonian today. A full copy of the text will be avalible thru Marf's In The News in case the Oregonian article link gets removed.

2000 Archive

April 13, 2000:  Jennie Logsdon, one of our members from Oregon coast, appeared in the Oregonian today. A full copy of the text will be avalible thru Marf's In The News in case the Oregonian article link gets removed.

July 31, 2000:  The national convention site has been announced for 2001, and it is in Seattle, Washington! The OCNMF has volunteered to assist the Washington chapter if they need help. Information will be added at On To Seattle as it becomes avaliable, along with a link to the Washington Chapter web site, currently under construction. We may be getting a second sponsor soon. The Eagles Auxillary in Eugene, OR is considering sponsoring OCNMF as one of their charities for 2000 - 2001.

August 1, 2000:  The chapter is proud to announce the appointment of Laurie Moyer as the new Vice-President! We still need to find someone for Secretary, and especially Treasurer to handle the basic month-to-month responsibilities of chapter correspondance and finances.

December 28, 2000: Saddly word has come to me that a young man, 18 years old, has died suddenly of undiagnoised Marfan's related heart problems. Details are still sketchy. The chapter will express our condolences to the family as more info becomes avalible. December 20, 2000: The Interum Treasurer will be having surgery on his aorta on 12-28-2000 at OHSU in Portland. Click on President's Journel for updates. December 16, 2000: From the Desk of the President - OCNMF As some of you may know, the Interim Treasurer, Daniel Moore, (aka - my husband) has developed a rapidly expanding progression from dilation of the aortic root to an aneurysm, and will be having surgery at OHSU on December 28, 2000 to replace his aortic valve, accending aorta, and aortic arch, as well as bypass a 70% clogged artery. As unexpected and a scary a time as this is for both of us, I would like to try to use this time to help you and all the members of the Oregon Chapter of NMF. Although we have had a few meetings, and put several projects on the drawing board, things are progressing along at a snail's pace. I take part of the blame as I know there are times I could be working on Marfan's work and chose to other things. I will try to get better. A survey to determine how Marfan's specifically affects our Oregon membership, what resources they would like us to develop, what projects they feel would best advance our mission statement, and get a better idea of who is interesting promoting the cause of Marfan's here in Oregon is 85% complete. Watch for it soon! Traffic through the Oregon chapter website is going very well, with about a 100 hits a month. We had our 1000th hit a week ago! Thanks for spreading the word! I have a friend from work that is volunteering to start translating some of the site to spanish for "The Spanish Outreach Project", and another who may be able to translate it into Korean. Attempts to get a written newsletter completed to reach those not online has been very slow going. Does any one want to help put it together as Editor? I'm average 2 - 4 calls a month about Marfan info on the Oregon Chapter number, and I try to follow-up as best I can, but as several of you can attest - it has been hit and miss. Anyone interested in becoming Secretary? There are many projects on the drawing board. Unfortunately most are hampered by a lack of funds. Fundraising has been relatively quiet, with only a presentation in Eugene to the Eagles Auxiliary for their consideration as sponsor to the OCNMF as one of their charities for 2000 - 2001 in August 2000. A few have paid their annual $10.00 dues for this year (Thanks!), but we have not as yet pushed a dues drive. Of course those that cannot pay will not be expected to, but many are able. If we can even collect $10.00 from 50 families, we will rejuvenate the state fund by $500.00. This could pay for most of the printing and mailing costs for 1 year. In addition, with big companies like NIKE, Intel, HP, Janzen, among others here in Oregon we have a huge potential to help National in getting the kind of money needed to do more research, as well as help here locally. Anyone interested in becoming Fundraising Coordinator or Treasurer? As we start to get the word out about Marfan's and find previously undiagnosed cases, a support system becomes really important in order to cope with all that Marfan's brings. This will become even more evident now that the Oregon School Activities Association high school sports pre-participation exam guidelines for the year 2000 have been revised to include several questions and specific criteria for doctors to watch for that might help to find undetected cases of cardiomyopathy, Marfan's syndrome, or other cardiac related conditions that occasionally cause premature deaths, especially in athletes. Inevitably more cases of Marfan's will be discovered, and we need a support system in place to help them cope with the diagnosis. Daniel & I are personally lucky to have a very good network of family and friends, but all except Laurie Moyer (OCNMF Vice-President) are not Marfan's knowledgeable. We still have lots of questions and few to talk to about what to expect after the surgery. It must be even worse those who have not yet been diagnosed and will face our same fate in the future. It is suspected there may be as many as 100 - 300 undiagnosed Marfan's  affected in Oregon. We need to be ready for them, as well as the 250 or families currently on the mailing list. Would anyone consider stepping up as Support & Outreach Coordinator? Many are asking for lists of medical providers familiar with the medical concerns of  Marfan's, as well as legal councilors who are compassionate and knowledgeable about dealing with the disability claims, and insurance issues often encountered. Would anyone care to act as Resource Coordinator? We had a reporter who was willing to do an article for Channel 2, but never followed up. Would any one consider being a Media Liaison? With Have-a-Heart just around the corner in February, and the national convention in Seattle only 8 months away, we need suggestions, volunteers, and your support to help jump start us. We appreciate all your well wishes in the weeks to come, but more that I am going to try to turn this into a good thing for all the Oregon Marfan's members. I will be looking for laptop to occupy my time in the hospital, and hope to get some real work done. Any suggestions will be welcome. We want to come to Seattle next summer with many accomplishments, and to make you all proud. We are hoping to see most of you there and want to make the Oregon Chapter one of the region's strongest! Wishing you a happy holiday season, and a joyful new year! December 12, 2000:  The OCNMF Page celebrates it's 1000th hit since it's launch in February of 2000! We are averaging 100 hits a month now. August 18, 2000:  The Oregon School Activities Association school sports pre-participation exam guidelines for the year 2000 have been revised to include several questions and specific criteria for doctors to watch for that might help to find undetected cases of cardiomyopathy, Marfan's syndrome, or other cardiac related conditions that occasionally cause premature deaths, especially in athletes. We are pleased to see the Oregon School Activities Association taking this positive step that will hopefully save lives.  Click here >>> OSAA to read the Kudo's letter to the OSAA or to view the new guidelines.

This page was last updated on: April 15, 2006

February 26, 2000: Meeting Follow-up The first meeting of 2000 was held on Saturday February 26, 2000 Sharon Bolen, the Support Group CarrierLink / Volunteer Coordinator for Legacy Good Samaritan Hospital & Medical center graciously arranged for us to meet on Saturday,  February 26, 2000 from 1:00pm to 3:00pm, at  Legacy Good Samaritan Hospital Neurological Sciences Center. We had a total turn-out of 9 which we felt was good for short notice. We went over some of the upcoming projects, brainstored a bit, and just got a chance to meet fellow Marfan's families. All of us are looking foward to the next meetings and events.