Oregon Chapter NMF - Mission Statement - Education - Support

Education-Support-Research

Our Chapter's Mission

The National Marfan Foundation was founded in 1981 by people who have the Marfan syndrome and their families. It is a voluntary organization that has three objectives:

* Provide information about Marfan's to patients, family members, and the health care community.

* Provide a network of communications for patients and relatives to share experiences, support one another

and improve their medical care.

* Support and foster research.

In 1995, the NMF's Professional Advisory Board and Board of Directors endorsed the concept of expanding the mission of the National Marfan Foundation to encompass the spectrum of related familial conditions. This will extend the benefits of the Foundation's programs to an even larger number of affected individuals than the one in 5,000 to 10,000 in the general population who have the strictly-defined Marfan syndrome.

This is a summary of the mission of NMF, and we are adopting these as our chapter mission as well.

Education

We have several projects planned for the next 2 years, and with your help and support we can see them come to pass.

Oregon Emergency Room Campaign

Oregon PE Teachers Education Campaign

Hispanic Outreach

Eastern Oregon Outreach

Click on these links to find out more.

Support

Medical Resources

We have begun to build a medical resources list.of genetics experts with the help of Kate Detrick at OHSU , but we need cardiology, opthomology, orthopedic, dental, ostiopathic, chiropractic, and many other specialists who are knowlegeable about and willing to see Marfan folks. If your doctor(s) would like to be added to the list, please encourage them to send their name in. They may be asked to complete a short survey to better determine how familiar they are with Marfan's.

Children's Support

We are still hoping to find councilers to help organize a children's support group that will meet and do fun things with these kids who have to deal with such a serious condition at such young ages. If you know someone who might be interested in helping out, please pass the word along and have them contact the chapter.

Medical Resource Network

Support Group Meetings and Events

Along with the meeting I am trying to scheduled in Portland for early March, I would also like to arrange a meeting for the folks in the southern and /or Eastern Oregon areas. Bend was the first choice suggestion

at the last meeting, as well as suggestions of The Dalles, Eugene, Corvallis, among others. Any one who has good ideas as to possible locations, please forward them to me, and we'll see what we can set up.

Research

Lynn Sakai was our first great Oregon Pioneer at OHSU with her and her discovery of the primary gene responsible for Marfan's, and now another one great one is at work.

Please click on the word Research above to read more about how Cheryl Maslin's and Lynn Sakai's ongoing work is helping to further our knowledge of Marfan's and how to manage it.

We are proud and very lucky to have such important people like Cheryl Maslin and Lynn Sakai in our own backyard, playing such important roles in the research of Marfan's. It would be great if we could get a fundraiser going to support them and their fellow researchers. Any ideas?

This page was last updated on: August 31, 2002



	Education-Support-Research Our Chapter's Mission

The National Marfan Foundation was founded in 1981 by people who have the Marfan syndrome and their families. It is a voluntary organization that has three objectives: * Provide information about Marfan's to patients, family members, and the health care community. * Provide a network of communications for patients and relatives to share experiences, support one another and improve their medical care. * Support and foster research. In 1995, the NMF's Professional Advisory Board and Board of Directors endorsed the concept of expanding the mission of the National Marfan Foundation to encompass the spectrum of related familial conditions. This will extend the benefits of the Foundation's programs to an even larger number of affected individuals than the one in 5,000 to 10,000 in the general population who have the strictly-defined Marfan syndrome. This is a summary of the mission of NMF, and we are adopting these as our chapter mission as well. Education We have several projects planned for the next 2 years, and with your help and support we can see them come to pass. Oregon Emergency Room Campaign Oregon PE Teachers Education Campaign Hispanic Outreach Eastern Oregon Outreach Click on these links to find out more. Support Medical Resources We have begun to build a medical resources list.of genetics experts with the help of Kate Detrick at OHSU , but we need cardiology, opthomology, orthopedic, dental, ostiopathic, chiropractic, and many other specialists who are knowlegeable about and willing to see Marfan folks. If your doctor(s) would like to be added to the list, please encourage them to send their name in. They may be asked to complete a short survey to better determine how familiar they are with Marfan's. Children's Support We are still hoping to find councilers to help organize a children's support group that will meet and do fun things with these kids who have to deal with such a serious condition at such young ages. If you know someone who might be interested in helping out, please pass the word along and have them contact the chapter. Medical Resource Network Support Group Meetings and Events Along with the meeting I am trying to scheduled in Portland for early March, I would also like to arrange a meeting for the folks in the southern and /or Eastern Oregon areas. Bend was the first choice suggestion at the last meeting, as well as suggestions of The Dalles, Eugene, Corvallis, among others. Any one who has good ideas as to possible locations, please forward them to me, and we'll see what we can set up. Research Lynn Sakai was our first great Oregon Pioneer at OHSU with her and her discovery of the primary gene responsible for Marfan's, and now another one great one is at work. Please click on the word Research above to read more about how Cheryl Maslin's and Lynn Sakai's ongoing work is helping to further our knowledge of Marfan's and how to manage it. We are proud and very lucky to have such important people like Cheryl Maslin and Lynn Sakai in our own backyard, playing such important roles in the research of Marfan's. It would be great if we could get a fundraiser going to support them and their fellow researchers. Any ideas?



		This page was last updated on: August 31, 2002