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Sacramento Area Network Group
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Meet our Network Group Leader
Susan Meier is the mother of 2 grown daughters (Stefanie & Michelle), married to Eric, and has Marfans. Her youngest daughter also has Marfans. Since retiring from the State last year, Susan enjoys spending quality time with her family, enjoying her 3 grandsons, volunteering for the NMF/Sacramento Local Network, going to the movies, reading, puzzles, crafts, traveling, gardening (watching her flowers grow), and spending time with friends.
Carrie Reinsimar is a press secretary for the Department of Conservation assisting with recycling and land preservation programs. She spends her off time traveling (California and Hawaii) and visiting friends and family. She is the only family member diagnosed with Marfan Syndrome and wants to help in some small way, those living with Marfan. Carrie wore the Milwaukee brace for 10 years, underwent a spinal fusion at 14 at Shriners Hospital and is monitoring her heart at Stanford. Carrie enjoys gourmet meals, gardening (as much as my body can handle), walking her dog Sally, decorating, hiking, Scrabble, her nieces and nephews and enjoying the beauty of life and nature.
Contact Information
Contact:
Susan Meier
(916) 632-3214
susan.meier@starstream.net
Contact:
Carrie Reinsimar
carrieRcares@yahoo.com
Description of the Group
Our local group is comprised of families with young children, teens, young adults, and parents who are affected by Marfan Syndrome (either personally or as a parent of an affected child). We currently have approximately 20 active members who meet about once every 3 months to discuss concerns, upcoming surgeries, living with Marfans, insurance needs, what the National Marfan Foundation is working on, etc.
Meeting Location
Susan Meier's home - 2207 Invar Court, Rocklin, CA - due to the size of the start up group, we are able to meet in a home. As the group grows, we will probably be moving to a local hospital/community room.
(click image for a larger PDF version)
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 at (916) 632-3214. [Details]
November 2011 - Network Group Meeting: Exact date and location to be determined. Contact Susan Meier for more information.
Announcements
Members Raising Awareness in their Communities:
- School District: Yuba City Unified School District
Training conducted in Yuba City, on September 17th and 18th, 2007, by the Physicians from Sutter Medical Center and Children’s Specialists Medical Group of Sacramento, Attended by school nurses in the Yuba-Sutter area. Funding for training and brochures, provided by the McCullough family (Barbara and her husband, the late Don McCullough). State Mandated scoliosis screenings for 7th and 8th grade students occurred during February and March. Nurses also performed the 3 basic visual checks for Marfans, recommended by the Physicians during the nurses’ training. As a result of these trainings with the school nurses, there have been 3 students suspected of having Marfans who were then referred to their private physicians. Also, the school nurses spoke about Marfan Awareness and handed out the Fremont Rideout Marfan flyer during their annual Parent Preview Night on February 5th, 2008, at Andros Karperos Middle School in Yuba City, California.
- Hailey Chapple and her mom, Jennifer Saylor, both affected by Marfans, created an eye-catching “family tree” poster to display at several businesses in the Modesto, California, area for the Hang a Heart campaign in February. They raised over $75 to help support the National Marfan Foundation in its first community campaign. Way to go Hailey and Jennifer!
- The Greves Family from Castro Valley, California, held a Marfan Awareness fundraiser on March 1st, entitled “Ninth Annual Friends and Family Charity Dance.” Over 250 people were present for the music and dancing, as well as the Silent Auction which netted the Northern California Chapter of the NMF $2,010, which was used to help fund the Chapter’s Marfan Educational Symposium in May. Special Thanks to the Greves Family for their fantastic fundraising and Marfan awareness event!
Network News
On Saturday, May 1, 2010, the NCCNMF presented its Third Annual Regional Marfan Educational Symposium at William Jessup University in Rocklin, CA. The key speakers included:
- Dr. David Liang, Associate Professor and Director of The Stanford University Center for Marfan Syndrome and Aortic Disorders, who provided us with an update on the Losartan Clinical Trial
- Dr. Michael Fischbein, Assistant Professor of Cardiothoracic Surgery at Stanford University Medical Center, who presented expert medical information on aortic dissections, heart surgeries and outcomes
- John Torres, Manager of the California Office of the Patient Advocate, who provided information regarding the Department of Managed Health Care's Help Center and the Office of the Patient Advocate
- Dr. Ian Carroll, Instructor of Anesthesia from Stanford Hospital and Clinics, who spoke about pain management and its effects on the body and mind
- Dr. Bonnie Dwyer, OB/GYN formerly from Santa Clara Valley Medical Center
- Maya Zimmerman-Brown, Chapter member and new mom, who spoke about "Pregnancy in Marfan Syndrome".
Thanks to a generous donation from the Sacramento Tall Club, we were able to end the full day of sessions on a lighter note by having Erin Cote from ULaugh, provide us with a fun interactive experience on how to laugh and why laughter is so important. The Chapter was able to raise over $1,175 through registration fees, donations and door prizes.
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.
On May 3rd, 2008 the Northern California Chapter hosted the First Annual Regional Marfan Educational Symmpoisum in Rocklin, California. The Chapter is pleased to announce that the Symposium was a HUGE success. Estimated attendance was 68 total (61 adults, 7 kids/teens). We received about 26 evaluations; all glowing with several 5+, lots of 5s, a few 4’s, a few 3’s, and a 2 (range was 5 for excellent, and 1 for poor).
Generous donations received during and immediately after the Symposium amounted to $1180. The Chapter received several in-kind donations for office supplies, food, decorations, prizes, and mailings. To help offset some of the Symposium expenses, the Chapter utilized the Greves Families’ Fundraiser proceeds (in excess of $2100).
The Sacramento Local Network Group met on February 2, 2008, at the home of Susan Meier in Rocklin. There were 12 members present, and we enjoyed our featured presenters, Carla Munt and Debbie Mann, who shared their Marfan stories of hope, support, and perseverance in living with a Marfan spouse and raising a Marfan child, respectively. A group photo was taken after the meeting ended. (click image for larger version)
Front Row: Debbie Mann, Michelle Meier, Morgan Joyner, Anna Joyner, and Susan Meier
Back Row: Carla Munt, Gary Mann, Jonathan Joyner, Rita Wronkiewicz, Hailey Chapple, Jennifer Saylor, and Brandon Matlock
Meetings in 2009:
- March 15, 2009 – Sacramento Local Network Group Meeting; Spring Symposium planning; budget planning for 2009-10.
- April 24, 2009 – Chapter Spring Steering Committee Meeting, budget planning for 2009-10, fundraising ideas, NMF Conference information.
- June 6, 2009 – Sacramento Local Network Group Meeting and Family BBQ.
- Chapter’s 9th Annual Family BBQ and Fundraiser; and Steering Committee Meeting. Please contact BBQ Coordinator, Kim Fliege for more information at kfliege@sbcglobal.net; 650-561-9980.
- December 6, 2009 – Sacramento Local Network Group Meeting. Please contact Susan Meier (susan.meier@starstream.net or at 916-632-3214) for more information.
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