Sept 18, 2002: Sorry for not updating sooner, my computer is barely holding together and the page has crashed the last 3 times I have tried to update it.

We had our fall meeting in Portland at Providence Hospital on Oct 5th, and although the turnout was low, it went very well. We announced the good news that Providence has agreed to be our first hospital to participate in the ER Campaign! Also we announced a verbal sneak peak about the Oregonian article of a Portland family that is trying to help a very ill Syrian man get to the USA for urgent medical treatment. You can read about it at:


We will be in Eugene Oregon on October 18th at the Emmaus Luthern Church from 7pm - 8:30pm.
All in Southern Oregon on our mailing list have been notified and we hope to see many of you there!

September 15, 2002: Great news! Laurie has found space at Providence in Portland for a meeting on Oct 5th. Unfortunately we still do not have a space for the Eugene meeting on October 18th yet, but I do have a lead on some space in a local church that is reported to be close to Sacred Heart Hospital. (Checked with Sacred Heart - they are pessimistic about finding any space). We are doing the final updates to the mailing list and hope to send out flyers soon. We do not have any guest speakers slated for the meetings, and may decide to forgo them, as we may just want to count on getting to know each others. I would like to try to have a representative from the Ladies Eagles Auxillary attend in Eugene and The Portland Skyliners attend in Portland so we can say a big "Thank You" for the money they have contributed this past year that is enabling us to get up and running again.  Start thinking of some ideas for a possible fundraiser for the national "Have-A-Heart" in February.

Aug 16, 2002: Was somewhat disappointed in the "ICU Arkansas" coverage of the Marfan affected family. The family had both Marfan's & Long QT, and most of the emphasis was on the Long QT issues. There was no mention of the importance of an echocardiogram or the danger of arotic dissection. On the other hand we did have one more local inqury which may have been a result of the show. I guess it's still a good thing whenever the word gets out about Marfan's. I was also very disappointed with the local ABC affiliate (KATU) who totally ignored all our voice mails and emails requesting a segment.  With school starting we would have loved to get an increased awareness of Marfan's screening in regards to the OSAA's pre-participation exam guidelines for high school students participating in sports. We saw it as a change to save a life. We have no idea how KATU saw it as they never responded.

August 12, 2002: We are looking at having a meeting in Eugene, OR, on the evening of Oct 18th and need a meeting space. If you have any ideas please call or email ASAP. Also we would like to have a meeting in the Portland area sometime in Sept or Oct and need space as well. Please contact us ASAP also if you have ideas. We need at least 4 weeks notice so we can put together mailers.

August 11, 2002: A family with the Marfan syndrome will be featured on the second episode of a four-part series titled "ICU Arkansas", a primetime series on ABC-TV (10 PM Eastern Time). It is expected that the segment with the Marfan syndrome will air on August 14th. We will be trying to get a hold the local ABC affliate to see if they can do a segment on the either one of the news segments or "AM Northwest" or both perhaps Wedsneday or Thursday. This is an especially good time to have them do an article, with school starting we could put a big emphasis on the new Sports Physical Screening update put into place 2 years ago by Oregon School Activities Association (see OSAA link to the left). Also, Lynn Sakai, who helped discover the defect that causes Marfan's, is doing some new research at our own Portland Shriner's Children's Hospital. (See Research link on home page.)

February 19, 2002: All 2001 entries have been moved to 2001 Archives. 

Every February is Have-a-Heart for Marfan's month. Although we do not have an official fundraiser yet, I have a lead on a possible activity involving a local laser tag location who's owner also happens to be in the Oregon Chapter membership ... We will keep you posted.  I encourage all of you to check out Chapter News for more info.  Also we are still not able to have a meeting until we can find space for 30-40 people in the Portland area for early fall, as well as southern Oregon for 30-40, perhaps Eugene or Covallis.
2002 Archives

This page was last updated on: April 15, 2006

Sept 18, 2002: Sorry for not updating sooner, my computer is barely holding together and the page has crashed the last 3 times I have tried to update it.

We had our fall meeting in Portland at Providence Hospital on Oct 5th, and although the turnout was low, it went very well. We announced the good news that Providence has agreed to be our first hospital to participate in the ER Campaign! Also we announced a verbal sneak peak about the Oregonian article of a Portland family that is trying to help a very ill Syrian man get to the USA for urgent medical treatment. You can read about it at:


We will be in Eugene Oregon on October 18th at the Emmaus Luthern Church from 7pm - 8:30pm.
All in Southern Oregon on our mailing list have been notified and we hope to see many of you there!

September 15, 2002: Great news! Laurie has found space at Providence in Portland for a meeting on Oct 5th. Unfortunately we still do not have a space for the Eugene meeting on October 18th yet, but I do have a lead on some space in a local church that is reported to be close to Sacred Heart Hospital. (Checked with Sacred Heart - they are pessimistic about finding any space). We are doing the final updates to the mailing list and hope to send out flyers soon. We do not have any guest speakers slated for the meetings, and may decide to forgo them, as we may just want to count on getting to know each others. I would like to try to have a representative from the Ladies Eagles Auxillary attend in Eugene and The Portland Skyliners attend in Portland so we can say a big "Thank You" for the money they have contributed this past year that is enabling us to get up and running again.  Start thinking of some ideas for a possible fundraiser for the national "Have-A-Heart" in February.

Aug 16, 2002: Was somewhat disappointed in the "ICU Arkansas" coverage of the Marfan affected family. The family had both Marfan's & Long QT, and most of the emphasis was on the Long QT issues. There was no mention of the importance of an echocardiogram or the danger of arotic dissection. On the other hand we did have one more local inqury which may have been a result of the show. I guess it's still a good thing whenever the word gets out about Marfan's. I was also very disappointed with the local ABC affiliate (KATU) who totally ignored all our voice mails and emails requesting a segment.  With school starting we would have loved to get an increased awareness of Marfan's screening in regards to the OSAA's pre-participation exam guidelines for high school students participating in sports. We saw it as a change to save a life. We have no idea how KATU saw it as they never responded.

August 12, 2002: We are looking at having a meeting in Eugene, OR, on the evening of Oct 18th and need a meeting space. If you have any ideas please call or email ASAP. Also we would like to have a meeting in the Portland area sometime in Sept or Oct and need space as well. Please contact us ASAP also if you have ideas. We need at least 4 weeks notice so we can put together mailers.

August 11, 2002: A family with the Marfan syndrome will be featured on the second episode of a four-part series titled "ICU Arkansas", a primetime series on ABC-TV (10 PM Eastern Time). It is expected that the segment with the Marfan syndrome will air on August 14th. We will be trying to get a hold the local ABC affliate to see if they can do a segment on the either one of the news segments or "AM Northwest" or both perhaps Wedsneday or Thursday. This is an especially good time to have them do an article, with school starting we could put a big emphasis on the new Sports Physical Screening update put into place 2 years ago by Oregon School Activities Association (see OSAA link to the left). Also, Lynn Sakai, who helped discover the defect that causes Marfan's, is doing some new research at our own Portland Shriner's Children's Hospital. (See Research link on home page.)

February 19, 2002: All 2001 entries have been moved to 2001 Archives. 

Every February is Have-a-Heart for Marfan's month. Although we do not have an official fundraiser yet, I have a lead on a possible activity involving a local laser tag location who's owner also happens to be in the Oregon Chapter membership ... We will keep you posted.  I encourage all of you to check out Chapter News for more info.  Also we are still not able to have a meeting until we can find space for 30-40 people in the Portland area for early fall, as well as southern Oregon for 30-40, perhaps Eugene or Covallis.