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Northern California Chapter

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Meet our Chapter Officers (2011-2013)

Stephanie Cooper-Noe - President
Stephanie has been involved with the Chapter since 2000, most recently serving as Secretary for the past four years.  Although she is not affected, her husband, David, and their two daughters, Dominga (18) and Samantha (10), are affected.  She believes that getting her children involved with the Marfan community early will help them to develop a lifelong support system of friends their own age.

Marla Greves - Vice-President
Marla was diagnosed with Marfan Syndrome at age 8.  She has recently become more active in the Chapter by serving as a member on the Sterring Committee.  Marla has also helped with the organization and hosting of the Chapter's Annual Family BBQ at her family's home in the Bay Area for the past several years.  She is looking forward to serving the Chapter as Vice-President and raising awareness about Marfan Syndrome.

Elizabeth Hernandez - Secretary
Elizabeth has been active in the Sacramento Area Local Network Group since 2008, and has been a member of the Chapter Steering Committee for the past couple of years.  She is the mother of a teenage son affected with Marfan Syndrome, and enjoys meeting other parents and sharing her son's Marfan experiences in order to help others.  Elizabeth works full-time in the insurance industry and has been a dedicated volunteer at the Chapter's Marfan educational symposia and at fundraising activities.

Susan Meier - Treasurer
Susan recently served as President for the past four years, and is now serving as Treasurer.  Susan retired from the State of California in 2006, after having worked for 17 years at the Office of the Patient Advocate and the Department of Social Services.  While living with Marfans, as well as having an adult daughter who is also affected, Susan is able to share her unique perspective on advocating for health care, understanding patients' rights, and acquiring disability benefits.  Since being diagnosed in 2001, she has been an active member of the NMF and the Chapter Steering Committee.

Steering Committee Members
Alison Waterman, Amber Darby, Bob & Elaine Raisler, Carla Munt, Carrie Reinsmar, Charlotte Lusschen, Chaz Benedict, Cheryll & Steven Gasner, Darren McBride, David & Stephanie Noe, Deborah Collins, Deeahna Lorenz, Don Brayton, Elizabeth Hernandez, Emily Wheeler, Gwen Barrett, Heidi & Todd Law, Holly Sparkman, Janet Tashima-DeBoskey, Jonathan Joyner, Kathleen Knox, Kim Fliege, Kim Nemchick, Linda & Lonn Lorenz, Mark & Maya Zimmerman, Marla Greves, Nancy Mateyka, Paula Terrey, Peggy Johnson and Susan Meier.


Contact Information

Contact:
Stephanie Cooper-Noe, President
(916) 215-7872
scnoenmf@gmail.com

Group Description

Founded in 1982, the Northern California Chapter remains dedicated to raising awareness of Marfan syndrome and related disorders in the Northern California area.   Membership includes over 1100 individuals, and four Local Network Groups (Marin County, Silicon Valley, Redding and Sacramento area).  The Chapter’s focus is on awareness, education, fundraising, and support.

Upcoming Meetings and Events 

Saturday, October 1, 2011: 11th Annual Chapter Family BBQ: Saturday, October 1, 2011 from 1 to 5 p.m. in Castro Valley.  Please RSVP by September 17th by contacting Susan Meier at susan.meier@starstream.net or (916) 632-3214.  [details] 

Announcements

Chapter News

Saturday, October 2, 2010 – The Northern California Chapter held its Tenth Annual Chapter Family BBQ and Steering Committee Meeting in Castro Valley, at the Greves residence.  Over 65 Chapter members, relatives and friends were in attendance to enjoy the event and perfect BBQ weather.  Special thanks to the following for helping to make the 10th Annual BBQ a huge success: Our host family, Toni, Mark and Marla Greves; Charlotte Lusschen, the BBQ Coordinator; Maya Brown-Zimmerman, Fundraising Chair; and Bob and Elaine Raisler, our expert grillers.  A special presentation was made to acknowledge numerous Chapter members who have “served many years as volunteers” to the Chapter since its formation in 1987.  Updates on the Losartan Trial and the new Marfan diagnostic criteria were presented to the group by Dr. David Liang from the Stanford Marfan Clinic, who also answered questions.  Door prizes were awarded and a Special Drawing was conducted during the BBQ, that generated over $2900 to be used for the 2011 Marfan Educational Symposium being planned for April 30, 2011, in Rocklin, CA.

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3rd Annual Regional Marfan Educational Symposium was held on May 1, 2010, at William Jessup University in Rocklin.  Approximately 65 adults and 15 kids/teens attended the event.  The featured speakers included Dr. David Liang (cardiologist) from the Stanford Marfan Clinic; Drs. Michael Fischbein (cardiothoracic surgery) and Ian Carroll (anesthesiologist and pain management) from Stanford University Hospital & Clinics; Dr. Bonnie Dwyer, OB/GYN (high-risk pregnancies); Maya Brown-Zimmerman, Chapter Member (pregnancy in Marfan patients); John Torres, Manager of the California Office of the Patient Advocate (HMO Help Center information, patients rights); and Erin Cote, from ULaugh to end out the full-day of sessions.   Symposium Contact:  Susan Meier (916) 632-3214 or susan.meier@starstream.net for more information.

Saturday, October 3, 2009 – The Northern California Chapter held its Ninth Annual Chapter Family BBQ, and Steering Committee Meeting in Castro Valley, at the Greves residence.  Over 70 members and their families were in attendance to enjoy the gathering of friends and families, good food, networking, and guest speakers:  Stephanie and Dominga Noe, and Katie, Kami and Susan Delgardo (all Rochester NMF Conference attendees).   Dr. David Liang, from the Stanford Marfan Clinic, generously donated his time and provided complimentary echocardiograms to several members as well. The Chapter raised over $2500 through ticket sales for numerous great prizes donated by Chapter friends and families, and the sale of handmade scarves donated by the Meier Family.  All proceeds will be used toward costs of the Chapter’s 3rd Annual Regional Marfan Educational Symposium, to be held on May 1, 2010, in Rocklin.

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Saturday, November 14th, 2009 – NMF Regional Meeting with Carolyn Levering, President and CEO of the NMF, in Rocklin at the home of Susan Meier.

Sunday, November 15th, 2009 – NMF Regional Meeting with Carolyn Levering, President and CEO of the NMF, in Menlo Park at the home of Kim & Malcolm Fliege.

New Network Group Formed in Silicon Valley:  Maya Zimmerman has volunteered to form and lead a new network group for the Northern California Chapter – Silicon Valley Network Group.  The new group met on December 11, 2009, at Stanford Marfan Clinic.  For more information on this new group and future meetings, please contact Maya at maya.zimmerman@gmail.com or at (614) 551-0609.