2004 Conference

The Diabetes Insipidus Foundation's
First Annual Conference - Baltimore, Maryland
August 20 - 22, 2004

The first annual DiF meeting and conference was held August 20th through August 22nd, in Baltimore, Maryland. The conference was a tremendous success thanks to the herculean efforts of several board members, DiF members, and their families. More than the expected numbers of people attended the conference. This included DI founder, Marian Arminger and her family, people with DI, family members, and DI medical professionals. People traveled great distances to be together for the conference. 

DIABETES INSIPIDUS FOUNDATION
FIRST ANNUAL MEETING

Opening Address Honors the Armingers
by Jody K. Vilschick

Welcome to the first ever meeting of the Diabetes Insipidus Foundation. Thank you for being here! This is a wonderful day for all of us.

Just over a year ago, when I met Mike Gandrud for the first time in person, he told me that my son, Eli, who has nephrogenic DI, was the first person he'd ever met with DI. And then Mike shared with me his dream of having a meeting where people with DI can gather together, share their experiences, establish friendships with other people who understand what it's like to have DI, and learn about managing DI together.

Today is a result of his dream. Thank you, Mike, for sharing your dream and pushing us all to help make it happen.

But we're also here because of someone else's dream. In 1996, Marian and Joe Arminger decided to create the Diabetes Insipidus Foundation. At the time, there wasn't any other organization dedicated to providing information and patient support to people with DI. 

Starting from nothing, they created this organization together. They put in their time and yes, their money, to formalize the organization and make sure it was properly legally grounded. Marian pulled together the Scientific Advisory Board and the Board of Directors, without which this organization wouldn't enjoy the credibility we have today.

Marian started the newsletter, and then the Foundation's web page. She ran everything single handedly for several years until she found other volunteers willing to help her. During the years she was president - from 1996 to 2003 - she answered thousands, if not tens of thousands, of emails and letters and phone calls. One of those was mine, in 1997, just after my infant son had been diagnosed.

Marian provide me information and gave me strength to tackle learning about DI as well as learning to be a new parent [Editors not: you can read about Eli's first year on DiF's web page, at www.diabetesinsipidus.org.] Marian told me to buck up, pull myself together, and start giving back to the DI community. Then she dumped the newsletter on me. And that saved me.

It's because of Marian that I stand before you today, and because of her that we are all gathered here in this room. There are no words to adequately describe our gratitude and appreciation for all she has done for us.

Letter from Beth Perry
Creston, Iowa
August 11, 2004

Dear Friends,

Greetings to you who are attending the conference of the Diabetes Insipidus Foundation. I sincerely hope you have a very successful conference. Congratulations to all who have organized this important event.

My best wishes to Marian and Joe Arminger and family. Thank you for all you have been doing for the Foundation. Even though we haven't been in contact for a while personally, I read Endless Water faithfully and know that I join all the others who benefit from DIF in thanking you for your tireless efforts and dedication for the past few years. You enlarged on my earlier attempts to provide networking and information for persons who deal with diabetes insipidus in any of its various forms. Your energy and know-how created an organization that provides information and support to many who need them.

I wish it were possible for me to attend the conference. But due mostly to my husband's health situation, we aren't able to travel much. He has problems related to diabetes mellitus. Personally, as a nine-year cancer survivor, I am doing well.

To Jody and everyone else involved with the Diabetes Insipidus Foundation, I wish you continued success with the organization for it is very important and beneficial.

God bless you all.

How DI Has Affected My Dreams and Goals
by Joseph Arminger

Hello, my name is Joseph Arminger. I am 16 years old. I have idiopathic central diabetes insipidus (CDI). I am the son of Marian and Joe Arminger, the founders of the Diabetes Insipidus Foundation (DiF). I am honored to speak with you this afternoon. During this speech, I intend to tell you about my life with DI.

I have had this disease since I was born, and have been taking medicine for as long as I can remember. My mother told me that I nursed continually, day and night, and that it showed through the weight of my diapers. Until she weaned and potty trained me at 2 1/2 years, when I drank gallons of water and peed every 10 minutes.

My parents called my pediatrician, Dr. Arnold Brenner, and he immediately gave me a preliminary diagnosis of DI. This diagnosis was confirmed a few blocks from here, at the University of Maryland Hospital, by a water deprivation test. [For more information about the water deprivation test, please go to DiF's web page and click on "water deprivation protocol."] In those days, finding information about DI was difficult, and finding doctors was equally difficult. I cane to find out later how lucky I am to have Dr. Brenner as our pediatrician. He truly was a godsend to my entire family. Many people with DI are not so fortunate. Some people cannot afford the expensive costs of my medicine so they are forced to get the generic brand. Well, I think the generic brand does not seem to work as well because it is slightly different on the molecular level and many do not know this.

An organization was needed that could act as a clearinghouse of information and a support group for patients. My mother found Dr. Heinz Valtin, professor emeritus at Dartmouth University, and Dr. Gary Robertson, a professor at Northwestern in Chicago. Dr. Valtin's development of the Brattleboro rat enhanced the study of DI. [For more information about the Brattleboro rat, go to http://www.diabetesinsipidus.org/4di_brattleboro_ rat.htm.] Dr. Robertson's years of research have made him one of the world's pre-eminent authorities on DI. He invited my parents to take me to Northwestern to study the severity of my illness, as well as its cause. Because of early education difficulties, Dr. Roberta Diaz Briton's studies on vasopressin and its effect on learning became important to me. These excellent doctors and others on DiF's Scientific Advisory Committee (SAC) have had many positive effects on my life.

To help cope with DI, I take medicine called dDAVP, or desmopressin acetate, in the form of two injections a day. This dDAVP temporarily replaces the hormone my body does not make. Along with the dDAVP, I also take an aminio acid called L-Arginine. This helps with memory as well as enhances dDAVP's physical effects, as Dr. Brenner discovered. Without these two forms of medicine, my life would be terrible. Along with fluid consumption, this disease also affects my temperature regulation, temper, memory, and comprehension. School would literally be impossible without the medicine. Though sometimes the medicine just does not work at all. When this happens at school, I rely on my individual education plan (IEP) to give me extra time on work, so I can understand it and do it right the first time. I also get extended time on tests because I work slower than most because of my comprehension problems. There are also arrangements in school so that I can go to the water fountains and to the bathroom whenever I need to. Thanks to these arrangements, school is easier to deal with and is an area of success in my life.

When I am away from school and home at some place like an amusement park or a baseball game, I will bring extra medicine in case it wears off too early. If it did wear off too early, then I would be drinking and using the bathroom almost constantly. I also carry around a medical alert bracelet, just in case there is ever an emergency. It protects me from most doctors, who have certain presumptions when they hear the word diabetes. If I were to be given insulin, I would most likely die.

This, if anything, has fueled my career ambition to go into endocrinology. I wish to get into one of my three choices for medical school: Duke University, Johns Hopkins University, or University of Maryland Baltimore County. I hope that I can develop a more painless means of administering a more effective medicine. However, what I would really like to do is create a cure for DI. I have wanted to do this since I was 10 years old, and I have always stayed focused on this goal. Thanks to people like Dr. Arnold Brenner, Dr. Gary Robertson, Dr. Heinz Valtin, Dr. Robby Briton, Dr. Claude Migon, and of course, my parents, I believe this to be possible. Thank you.