• Meet our Chapter Officers
• Contact Information
• Description of the Group
• History
• Dates of Future Meetings and Events
• Meeting Location
• Announcements
• Upcoming Events
• Recent Events

Meet our Chapter Officers (2007-2011)

(l-r) Deeahna, Susan, Vicky, Stephanie

Susan Meier – President.  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.

Vicky Prager – Vice President.  Vicky has served two earlier terms as President and has been an active member of the chapter since 1996.  As a physician and an affected person, Vicky combines an understanding of the medical aspects of Marfan syndrome with a first-hand knowledge of the challenges it poses.

Deeahna Lorenz – Treasurer.  Deeahna is co-founder of the Chapter and currently serves as Treasurer.  She has also served in the past as its President.  She continues to serve the local Marfan community as a health psychology specialist, and has become the therapist and patient advocate for many clients with Marfan syndrome.

Stephanie Cooper-Noe – Secretary.  Stephanie has been involved with the Chapter for 6 years.  Although she is not affected, her husband, David, and their two daughters, Dominga (15) and Samantha (7) 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.

Contact Information

Contact:
Susan Meier, President

Phone:
(916) 632-3214

E-mail:
susan.meier@starstream.net

OR

Contact:
Vicky Prager, Vice-President

Phone:
(415) 665-7244

E-mail:
vprager@sfo.com

Description of the Group

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.

Dates of Future Meetings and Events 

SAVE THE DATE:  The Chapter is currently planning the 3rd Annual Regional Marfan Educational Symposium to be held on Saturday, May 1, 2010, at William Jessup University in Rocklin.  This year’s event will include topics of interest to those affected by Marfan syndrome, by a distinguished list of speakers that include:  Dr. David Liang, Stanford Marfan Clinic (Losartan Trial Update & Marfan Diagnostic Criteria Update); Dr. Michael Fischbein, Stanford Medical Center (Cardiovascular Surgery); Dr. Ian Carroll, Stanford Medical Center (Pain Management); Dr. Bonnie Dwyer, Santa Clara Valley Medical Center (High Risk Pregnancies and Women’s Issues); and Augie Maravilla, Analyst from the California Office of the Patient Advocate (health insurance options, patients’ rights).  Symposium Contact:  Susan Meier (916) 632-3214 or susan.meier@starstream.net for more information.  Registration Materials and more information will be available after February 1, 2010. 

Steering Committee Meeting – to be held April 30th, 2010, at location to be determined.  Contact:  Vicky Prager, Vice-President at vprager@sfo.com.
 

Upcoming Events

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.

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. 

Recent Events

Chapter News

2nd Annual Regional Marfan Educational Symposium held on April 25, 2009, at William Jessup University in Rocklin.  This year’s event focused on children and families affected by Marfans, with speakers Dr. Lawrence Rinsky and Dr. Rebecca Bernard from Lucile Packard Children’s Hospital, and Dr. David Liang from Stanford’s Marfan Clinic.  The David Noe family presented information on emergency preparedness and creating emergency plans.  Panels of teens and parents also presented their personal stories on living with Marfans, challenges and advantages.  Symposium Contact:  Susan Meier (916) 632-3214 or susan.meier@starstream.net for more information on speakers, presentations or materials.

Saturday, May 3, 2008 – The Northern California Chapter presented its First Annual Regional Marfan Educational Symposium, with over 60 members and children/teens in attendance at the Rocklin Community Center in Rocklin.  In association with the Stanford University Marfan Center and Related Aortic Disorders, featured speaker, Dr. David Liang presented on cardiovascular involvement from Marfans.  Dr. Wouter Schievink,from Cedars-Sinai Medical Center, also presented information on intracranial hypotension and dural leaks.  For more information and speaker presentations, see attached files.  (see photos below, click image for a larger version)