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Meet our Network Group Leaders
Contact Information
Description of the Group
Meeting Location
Upcoming Meetings and Events
Announcements
Network News

Meet our Network Group Leaders

Sherry Heldt	Sherry worked for 18 years as a Paraprofessional in Norris Middle School, working with special needs teens at an MH-Moderate level.  She retired from the Omaha Public School District as of June 2008.  She has been married to Roger for 38 years.  They had one child, their son Shawn, who at the age of 22, in December 2000, went to live with the Lord.  Shawn's death was due to an aneurysm and aortic dissection caused from having Marfan syndrome, diagnosed at autopsy.  Sherry had her aorta replaced in February 1995, but was unaware that she also had Marfan syndrome.  A year after Shawn's death, Sherry saw a Genetic Specialist at UNMC, and was finally diagnosed as having Marfan syndrome. Sherry and Roger's long term goal is to raise awareness of Marfan syndrome in the greater Omaha, Lincoln and surrounding areas.  "If we all can raise awareness in one person and that one person tells one more person, perhaps another family doesn't have to learn about Marfan syndrome the way Roger and I did.  One more person will know about Marfan syndrome, and a life will be saved." Sherry is currently serving on the Board of Directors with the Heart of Iowa Chapter of the NMF, entering her second term as a Member-at-Large.  She and Roger enjoy helping with Chapter activities, which provide another way of connecting with the Marfan community.
Debra Flearl
Jeni Guzinski	I was diagnosed with Marfan syndrome at the age of six by an eye doctor, who said that I had dislocated lenses.  I was then seen by a cardiologist and monitored.  I really didn't have any more characteristics of Marfans until my scoliosis was noticed at about the age of 13 by a nurse friend.  None of my family members had Marfan syndrome; I was the genetically spontaneous one. I have a 27 year old son who also has Marfan syndrome.  We both have had aortic repairs done by Dr. Kouchoukos in St. Louis, Missouri. My family and I were involved in the Marfan group here in Omaha prior to this group back in the 1990's.  In 2005 we met Sherry when we attended the National Marfan Foundation conference in St. Louis, Missouri.  Our family has tried to get more involved in the network group to raise awareness in our community.  We also feel that the more medical information we have, the better we can take care of each other.  We don't have access to a computer, so if you are interested in more information from me, please call.

Contact Information
Sherry C. Heldt
(402) 932-4504 
(402) 650-9762
roshawco@hotmail.com

Debra Flearl
(402) 455-9342
(402) 315-7778
dflearl@msn.com

Jeni Guzinski
(402) 310-2155

Description of the Group
The NMF Network Group of Omaha is a local meeting of the National Marfan Foundation that serves its members in the area by providing connections with peers, education on the Marfan syndrome, support for those affected with the syndrome and their family members, as well as offering ways to reach out and improve awareness in the community. Our mailing list reaches out to NMF members in southwest Iowa, as well. As we develop, we are affiliating with the closest chapter, the Heart of Iowa Chapter in Des Moines, Iowa. 
 
Right now our focus is getting to know one another, sharing our stories and forming a bond of support.  

Meeting Location 
All meetings (unless otherwise noted) are held at Monroe-Meyer Institute at 1:30 pm in Conference Room 3046
4420 Dewey Ave, Omaha, NE. 

Upcoming Meetings and Events
Saturday, February 4, 2012 - Dental/Genetic Presentation by Maurice Godrey, PhD (details)
Saturday, April 28, 2012 - Meet Us at Panera Bread! (details)

Annoucements

Network News
On Friday, December 9, 2011, our Network Group promoted awareness about Marfan syndrome and related connective tissue disorders at the 3rd Annual Cardiovascular Symposium at the Mike & Josie Harper Center, Creighton University Campus in Omaha, Nebraska.  Our Network Group set up a display table filled with materials to promote awareness to doctors, nurses, EMP personnel, fellows, residents and students.  For the last two years, we've been allowed to come in and promote awareness.  This has been a great opportunity for our group, not only to promote awareness, but also for people to recognize that there is a Network Group in Omaha connected to the National Marfan Foundation.

On Saturday, April 30, 2011, our Network Group had a social Meet Us At Panera Bread.  We met for coffee in the hope that we would meet some new people from the Lincoln, Nebraska area.  We did just that!  One of the Lincolnites who joined us was Chelsea Priess-Schmailzl, who has a seven year old daughter with Marfan syndrome.  Joining Chelsea was her son and younger sister.  Also present from Lincoln were Lou & Gary Salzman, and our Co-Chairperson Jeni Guzinski.

Heart of Iowa Chapter President Teri Dean and Treasurer Stella Lane drove down from Des Moines, Iowa to spend the morning with us and to meet Chelsea and her family for the first time.  Thanks, Teri and Stella!  Teri told the Network Group about the Moonlight Stroll for Marfan, on Friday, July 29, 2011, at The Shores in Pleasant Hill, Iowa, and the Walk/Fun Run Have a Heart for Marfan, held on Saturday, July 30, 2011.  For more information, contact Teri Dean at tkdean11@q.com.  To register for events, visit www.active.com.

The Network Group of Omaha Potluck Picnic was held on Saturday, May 21, 2011 in Antelope Park in Lincoln, Nebraska.  We had a number of members attend, including Gary & Lou Salzman, Frank & Jeni Guzinski, Chris Harvey & his friend Matt, Joe & Patty Botsford, and Roger & Sherry Heldt.  It was a small but intimate group.  We had a good time chatting and eating fried chicken and potato salad.  Lou made the baked beans, and other members brought their favorite foods to share, including brownies.  We will be celebrating five years as a Network Group as part of our fall football party with a 5th Annual Anniversay Cake.  It was a beautiful sunny day, after many days of rain.  The temperature was just perfect, and it was a beautiful day for a picnic.

Our network group met for the first time in 2011 on Saturday, January 22nd at the Monroe-Meyer Institute to plan the calendar for 2011.  We discussed presentations, socials, fundraising and 2012 planning.  There were nine of us present at the meeting.  We decided that the network's 5th Annual Picnic would be held in Lincoln, Nebraska, due to the fact that most of our general membership lives in the Lincoln area.  In conjunction with the fundraiser we will have a raffle/silent auction and invite people picnicing in the area to be part of our raffle/silent auction along with our members and their families.  It will be a potluck picnic with the network furnishing the entree, anniversary cake and beverages.  We discussed the types of presentations we would like to have and decided on two presentations for each date so that if one does not show up we will have a presentation to fall back on, and also to allow members to come to the presentation thay they are interested in.  We discussed when to have our football potluck in the fall and when to plan for the 2012 calendar.  The meeting lasted only about an hour and a half as it had to be cut short due to changing weather conditions.

The Omaha Network Group had a Marfan Awareness table set up at the 2nd Annual Cardiovascular Symposium at the Mike & Josie Harper Center on the Creighton University Campus on Friday, December 3, 2010 from 7am to 3pm.  Volunteers at the symposium were Norm and Carol Herzog and Roger and Sherry Heldt.

The symposium provided practitioners with clinically relevant information and state-of-the-art treatment options on cardiovascular diseases in order to enhance knowledge and performance and to promote patient care.

Our network group set up a Marfan Awareness table to allow the medical professionals attending to learn more about Marfan Syndrome and how important it is to recognize it in order to potentially save a life.  We got good response from the people coming over to the table and looking at the materials provided.  Many of them took materials and asked questions.  Overall, the turnout was good.

Our last get-together of 2010 was at Roger & Sherry's house on Saturday, November 13th for a pot-luck and to watch the Nebraska vs. Kansas football game.  GO BIG RED!  We had a great time, the food was so delicious and the football game was excellent.  We spent time together doing something everyone liked doing -- watching Nebraska football!  Final score: Nebraska 20, Kansas 3.