Posted by Liz Nichols on Sep 04, 2018
The speaker was Jenn Smith who talked about Children’s Tumor Foundation & Neurofibromatosis
Jenn Smith
Guests and Visiting Rotarians
Herb and Janice Wilson-- RC of Iowa City
Jenny Seylar-- Guest of Nancy Pacha
Amy Nicholson invited everyone to the IA MOST Salmon Dinner at her house, 6 pm, Friday, Sept 14.  Sign-up sheet will go around one more week.
Peggy Doerge is working on an ICARP past president's luncheon at noon on Sept 14 and would like past club presidents to RSVP for the lunch. 
Please update your email in your profile at if you have changed it recently.  Your email is one of the main ways we keep contact with members.
The Ockenfels are continuing to work on Coats for Kids even though it is not one of our current Rotary projects.  See Deb Ockenfels for information on making a contribution.
Dick Huber noted that September is Basic Education and Literacy Month for Rotary International.
A sampling of Happy Bucks:  Casey Cook was glad to get in 18 holes of golf without rain this weekend.  Mike Messier is sad that grandson, Max is back at home after a holiday visit and glad that his mom is back to normal after recovering from a fall. Liz Nichols is happy that Districts 6000 and 5970 are combining for one big Youth Exchange kickoff next weekend in Newton, but sad that her sister, Carol, is having to go through cancer treatment.  Jim Peterson and John McKinstry just got back from backpacking in the Sawtooth Range out west.  Deb Ockenfels has been putting in lots of time on the D6000 auction quilt for district conference.  Dick Huber celebrated the fact that 10-11 people whipped out Can Do duty inside of an hour on Saturday.
Ann Langenfeld introduced Jenn Smith, the mother of a child with Neurofibromatosis (NF) and an active contributor to the Children's Tumor Foundation. 
Neurofibromatosis is a genetic disorder that causes unpredictable growth of tumors virtually anywhere on or within the body.  There may be virtually no significant symptoms for many, but for a few the issues caused can be life-threatening.  About one in 3000 people have the most common form of NF and many don't even know that they are carriers with a 50-50 chance of passing on the gene to their children.  The two other forms are rarer, but can be even more devastating.  In one type of NF there is a high association of cancer with the tumors.  The level of seriousness relates to where the tumors grow in or on the body, and that is just a crap shoot.  There is no treatment and no cure at this time.  There is some promising research and a need for a great deal more to determine the causes and cures.
The UIHC has one of about 50 NF clinics in the country.  It currently has about 139 patients with most having the most common NF1 form of the illness.
The most important source of funding for research is a network of clinicians called the Children's Tumor Foundation.  It also takes care of non-medical issues such as providing assistance and information to the families of those with the disease.  Another organization connected with funding research for NF is Synodos trying to find a different path for researching the disease, including research using pigs as test animals.
Smith and her husband have helped to organize an annual walk-run called Little Heroes 5K where about 300 from across the state participate and raise over $25,000 per year toward research into curing NF.  This event not only raises money and awareness, but also provides an important outlet for the children with this disease to feel better about their abilities to participate in events like this.