Back to Chapter and Network Home Page 

• Meet our Network Group Leaders
• Contact Information
• Description of the Group
• Dates of Future Meetings and Events
• Announcements
• Links to our Affiliates and Programs

Meet our Network Group Leaders

Contact Information

Contact: Suzanne Bowman
Phone: (661) 513-0683
E-mail: qbbowman@hotmail.com

Description of the Group

The Los Angeles and Orange County Local Network serves southern California.  We usually meet once a year for a social/educational gathering, featuring a guest speaker.  New members are always welcome. 

Past meetings have featured Dr. Robert J. Siegel, Director of Cedars-Sinai Cardiac Noninvasive Laboratory, Dr. David Rimoin, Chairman, Medical Genetics Institute Cedars-Sinai, Dr. Kevin Miller, UCLA Professor of Ophthalmology, Joseph K. Perloff, MD, Professor of Medicine & Pediatrics and Founder of the UCLA Ahmanson Adult Congenital Heart Disease Center, Gregory Perens, MD, Pediatric Cardiologist at Mattel Children’s Hospital, UCLA, and Pamela D. Miner, RN, MN, NP: Nurse Practitioner at the UCLA Ahmanson Adult Congenital Heart Disease Center.

Dates of Future Meetings and Events 

Announcements

The Marf Scarf is a double-sided, fringed stadium scarf.  It wraps softly and warmly around your neck, or can be draped anyway you choose.  Using the colors dark red, white and black in its modern design, one side displays the NMF logo, while the other side reads "my heart's in the right place". The Los Angeles and Orange County Local Network Group conceived the idea of the Marf Scarf.  Award-winning designer Peter Levine created the scarf design.  He was the Executive Creative Director at Desgripes Gobe for 21 years, and has worked on branding strategy and graphic design projects for companies like Coca-Cola, Godiva, IBM and Estee Lauder. This scarf will surely come in handy during the chilly fall and winter months.  Each scarf sells for $20, including shipping for domestic orders.  (An additional shipping fee will be added to international orders.)  Proceeds for the sale of the Marf Scarf will benefit the 2013 NMF Conference in Los Angeles.  Click here to order your scarf.  They make great gifts, too! Size: 7" x 56", including fringe Contents: 100% acrylic

Casino Night 2011
April 30, 2011

Thanks to the help of some and the generosity of many, Casino Night 2011 was a success.  We had the second largest number in attendance and the largest dollars raised for one of our local events without corporate sponsorship.  There were 77 people in attendance and we raised $7,600!!

A special thank you to Julia Alires who once again made a delicious dinner for us.  Thanks to those who donated, attended or purchased items.  Hope you had fun.  This event could not be done without YOU!!

L.A. / OC Network Annual Meeting
Sunday, Oct. 17, 2010
UCLA Faculty Center
 
100 attendees feasted on lunch and listened to a panel discussion on Marfan.  Speakers were Reema Chugh, MD, Interventional Cardiologist, Adult Congenital Heart Disease and Heart Disease in Pregnancy, Panel Chair; Harold N. Bass, MD, Clinical Geneticist, Pediatrician; Thomas A. Pfeffer, MD, Chief Cardio-Thoracic Surgery;  and Morris M. Salem, MD, Interventional Pediatric Cardiologist -- all from Kaiser Permanente Hospitals in Los Angeles.
 
Also, Lisa Knight, RN, co-founder of Camp del Corazon, spoke about the free of charge, medically supervised camp for kids with heart disease, on Catalina Island; Jennifer Porter of Stillpoint Family Resources talked about Therapy and Your Personality Type; Michele Cripps mentioned the upcoming Casino Night, which this past year raised over $8,000 for NMF; Suzanne Bowman touted the Marflix free Lending Library; Michael Hart spoke enthusiastically of his experience at the 2010 NMF Conference; Mitchel Pariani, MS, Genetic Counselor at the Marfan Syndrome Center, Cedars-Sinai Medical Center, mentioned the progress of the Atenolol vs Losartan Clinical Trial; and Laura Siqueiros spoke of her passion for "Rent" and her attending the show last summer at the Hollywood Bowl, together with Alan Larson, father of Jonathan Larson, the late creator of the musical.

Minutes of the October 17, 2010 meeting were written by Mirian Hearn. 

Links to our Affiliates and Programs

Camp del Corazon is a non-profit organization that provides year-round experiential opportunities, free of charge, for children, ages 7-17, faced with the challenges of growing up and living with heart disease.  The camp is staffed entirely by volunteer counselors, nurses and physicians.
Lisa Knight, (818) 754-0312
www.CampdelCorazon.org

MARFLIX: The Marflix library contains Marfan related educational films, for adults and children, and in Spanish, too!  Borrowing from MARFLIX is easy.  Simply phone or send an email with the item you'd like.
Laura Siqueiros (562) 810-3177 losiqueiros@yahoo.net

NMF Contact Line
Regine Wood-Bluestein (310) 779-8206 reginew33@aol.com
Roelina Berst (310) 476-6190 roelinab@roadrunner.com

Saturdays with Santino is a social and support gathering for teenagers and young adults with Marfan syndrome.
Santino Hunter (626) 589-0353 santinohunter@yahoo.com

Stillpoint Family Resources provides healing and hope to individuals and families in crisis through counseling and education.  This non-profit organization charges for services on a sliding fee scale basis.
Jennifer Porter (818) 704-1327
www.stillpointresources.org


See recent event photos: http://www.flickr.com/photos/laocmarfan/
Julia Schlosser, Photographer

From left: Michael Hart, Suzanne Bowman, Carolyn Levering, Roelina Berst and Regine Wood Bluestein, February 5, 2011 at the home of Roelina and Chuck Berst. Out-going co-chairs Roelina Berst and Regine Wood Bluestein, who coordinated the National Marfan Foundation’s Los Angeles/Orange County Network since 2003, are pictured here at a tea held in honor of Carolyn Levering, President and CEO of the National Marfan Foundation.  Roelina and Regine handed over the reins to Suzanne Bowman, who became the new chair in February, 2011.

Suzanne Bowman (Chair) with her husband, Bill, and sons, Patrick and Reid.

Some of the LAOC members at a meeting at Roelina Berst's house on January 8, 2011.  This shot was taken by Santino Hunter.