Teri Dean at the 2009 NMF Conference

Interview by Peter Donato, Teen Council Member

Tell me a little bit about yourself.  First and foremost I am the mother of an amazing son.  After that, I am a wife and the CFO of a small chemical company. Between work and Marfan syndrome there is not much time left but with that time I am very involved in the Lions Club, having been a Past President, Interim Treasurer, and Zone Chair.  I love to read, duplicate stitch, flower garden and just be outdoors.  My dream retirement is to be at the Outer Banks of North Carolina.  

What made you get involved with the NMF?  My son was finally diagnosed with Marfan syndrome after 14 years of searching for answers to questions and issues that did not make sense regarding his medical conditions and subluxated lenses.  I was told when he was about 20 months old that I needed to see a psychiatrist because I questioned the shimmer in his eyes.  I was told to allow him to play basketball because if it were his son (an ophthalmologist at a state university) he would allow him to play.  We were told at age 13, he did not have Marfan syndrome by a genetics clinic; he did not have Beals syndrome…he was just unique.  Just a few months after that, he suffered a retinal detachment in his left eye that spontaneously healed itself and cost him 80% of the vision in that eye.  We were told by a regionally renowned ophthalmology clinic that the detachment was caused by Marfan syndrome.  Again, the search was started for answers and ended up with the booklet Marfan Syndrome written by Dr. Pyeritz and Cheryl Gasner. That gave me the information to contact the NMF.  The phone call to the NMF was answered by Priscilla Ciccariello which changed my life forever and she helped me get an appointment at John Hopkins where my son was seen by Dr. Pyeritz and Dr. McKusick and the diagnosis confirmed. 

What drives you to participate with the NMF?  The health of my son and all of my extended “marf” family…wanting to make sure that the proper diagnosis is made early and the best medical care is then provided.  Never having a family go through what Derek and I did for fourteen years to get someone to listen to the facts being presented and look at the whole person.  Research and answers that are available today that would not be so readily available if not for the NMF.  The fact that today there is hope in the lives of my family and friends; the physicians who give so freely of themselves to our community; the fact that these very same physicians take from their families to give to ours…how can you not be driven to participate in this amazing organization?

Do you feel that the NMF has changed your life?   Absolutely!  How?  The NMF has empowered me and given me tools and opportunities to educate, learn, and become a part of something so special and so much larger than myself.  I would never have been able to speak to a group of people, let alone medical students without the NMF.  I will never be a great public speaker but I can talk about Marfan syndrome with confidence.  Without all that the NMF does and provides to the volunteers, this would not be possible.

What was your role in bringing the NMF Conference to Rochester Minnesota?  I was listed as a co-chair with Heather Hinton from the Minnesota Chapter.  Sue Nelson, from Mayo Clinic, and myself did a presentation recruiting volunteers from the Rochester area since there was no official network group or chapter located in Rochester.  Recruited members from the Iowa group to chair committees and volunteer at the conference itself.  And what advice do you have for chapters who are preparing for a conference?  Each conference is unique but networking with other chapters that have experienced a conference is the first item on my list of  “TO DO’s”.  Start work as soon as you know the conference is going to be in your area.  Recruit volunteers….there are never too many.  Break the large jobs down into smaller tasks.  Empower your volunteers.  No, they may not do it exactly as you would, but if they are accomplishing the same thing, with no harm, let them do the job.  There is nothing more frustrating to a volunteer than to give their heart and soul and then their resources not being utilized because “it wasn’t done my way.”  Use the NMF staff as the huge frame of resources they are.  They have been doing conference for 30 years.  They do have knowledge of what works and doesn’t…but if you have an idea that may not have worked in the past, don’t be afraid to come forward and see if it works in your situation.  If you have something special you want to do, get out and raise the funds or items for that particular portion.  The NMF works so hard to raise money for all the things we need, education and research, support and volunteers, etc.….we need to do our best not to take from those monies and fund our own conference.

What advice would you give to people who are thinking about doing a fundraising or awareness event?  There is never a fundraiser event that is too small.  If you raise $1.00 for the NMF it is $1.00 more than was had.  And never let anyone tell you it can’t be done.  When we have a fundraising event, it starts with an idea from one of the group, and we just run with it.  We have meetings, e-mail meetings and bounce a lot of ideas off of each other.  We pretty much decide we want to do it and then figure out how to get it done.  Iowa is not the “Mecca” of population that other areas are but we keep pushing and asking for money.  It took ten years to actually raise $10K at our annual walk.  This year we finally made it.  Just never give up on the goal you set.  You will get there. If you see something that someone has done in the Connective Issues that looks interesting to you, do not be hesitant to contact that person.  They will be glad to share how they got started.  The best thing we can do is “steal” from each other’s good ideas and replicate in our own area with our own twist.  And it truly does not have to be large amounts.  There are many small fish in the ocean but they are just as important as the big ones.  We can have 10 small events to equal one large event and we are just as successful at those small events as the large one.