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Living With Wolfram Syndrome – Lauren Gibilisco

blood sugars scaleThe Blood Sugars Balance

By: Lauren Gibilisco

I had a few weeks where my blood sugars were unstable. If I ate something that would make me go high, I was still low. This happened for about 2 weeks. Now the bad thing about the timing of low blood sugars is that I’d probably be able to have a lot of ice-cream since it usually makes me go high. But I gave it up for Lent and couldn’t indulge. L Since then the blood sugars have been erratic. I could eat the same thing at the same time and do the same thing and my blood sugars were very different from day to day. Now unfortunately this was a problem because I was going to have another Botox injection into my bladder. I couldn’t eat or drink anything after midnight. So not knowing how my blood sugars would be, I ate a carb full supper. I ate pizza and did not give any Humalog and cut my Lantus down by 5 units. We had to drive into Omaha for the surgery which is 2 hours away. We were afraid that I would be low and get lower on the drive. So cutting down on the insulin would really help keep me from going low. After all this my blood sugar was only 199 which aren’t great but considering everything I did it was something we were comfortable with. By the end of the time I was in the hospital, which was about 10 hours, my blood sugars were 128. Thank goodness my blood sugars cooperated that day.

Now when I was in the hospital they asked me if I wore a pump. I told them “no” because I can’t see it and they said they didn’t think about that. Right now I am totally independent in taking care of my diabetes. I use pens to dispense the insulin and I have a talking meter. Now I know the pump would be very beneficial to me but it would make me dependent on someone again. I’m not quite sure how they work but I think someone would have to dispense the insulin in. I know it also beeps to let you know if you are going high or low. That is something else I would have a problem with. Right now one of my hearing aids seems not to be working well. I also believe my hearing has decreased again. I am having a very hard time hearing. When you are blind you rely on your hearing. But with me being hard of hearing I can’t rely on my sight. So unfortunately it makes it very difficult to use the pump and remain independent. They have talking meters; hopefully someday they will have talking pumps. But they would need to have the volume be very loud. Now mom WHAT did you say????? Sometimes it is very convenient to not being able to hear your mom.

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Crazy Bowl For Alex’s Army

Bowl For A Good Cause

Join Alex’s Army for a fundraiser with bowling, raffles and an auction on April 26th from from noon to 4pm at the Concord Bowl. Proceeds benefit The Snow Foundation for Wolfram syndrome research. $20 per person includes hot dog or hamburger, chips with a drink and the option to bowl. (Additional concessions will be available for purchase.)

To register please contact Amber Bieser at amberbzr@gmail.com

Crazy Bowl Fundraiser for Wolfram syndrome

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Shoot For a Cure

Saturday, October 31, 2015
Strathalbyn Farms Club
9:00 a.m.

The Inaugural Snow Foundation “Shoot For A Cure” Sporting Clay Competition will be held at the exclusive Strathalbyn Farm Club on Saturday, October 31, 2015. The event will include range practice and a 15-station sporting clay competition followed by lunch, a live auction and awards ceremony. All proceeds from the event will benefit The Snow Foundation, a nonprofit dedicated to raising awareness and funding for a rare and deadly form of Diabetes called Wolfram syndrome.

“Shoot for a Cure” Sponsorship Levels and Benefits

Tournament Presenting Sponsor

$15,000

  • Four Sporting Clay Shooting Teams (4 per team)
  • One Course Station Sponsorship
  • Company logo prominently displayed on all event signage
  • Company logo included on all tournament materials
  • Company mentions in event press release and with any media mentions. Media partners currently include: KMOV, Channel 4, 101 ESPN and News Talk 97.1
  • Company name and sponsorship level recognized at awards ceremony
  • Company logo on The Jack and J.T. Snow Scientific Research Foundation website

BUY NOW

Reception Sponsor

$10,000

  • Three Sporting Clay Shooting Teams (4 per team)
  • Company logo prominently displayed on all event signage

BUY NOW

Lunch Sponsor

$5,000

  • Two Sporting Clay Shooting Team (4 per team)
  • Company logo prominently displayed on all event signage

BUY NOW

Course Station Sponsor (14 available)

$2,500

  • One Sporting Clay Shooting Team (4 per team)
  • Company logo prominently displayed on (1) course station signage

BUY NOW

Individual Attendee (Non-Shooting)

$100

Admission to the Clubhouse during the Shoot Out.  Lunch, cocktail reception and fire pit area included.

BUY NOW

Can’t attend the event but want to support the foundation?  Make a donation by clicking HERE.

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Living With Wolfram Syndrome – Adam Zwan

PHD: Pray, Hope, & Don’t Worry

Wolfram syndrome moving vanMy whole life has revolved around health status and trying to control the progression of Wolfram syndrome. Even though the harder I try, the more difficult it seems to get. I decided to take a big chance and try living on my own. It has been made clear to me that everyone around me worries regardless of the circumstances. Thus, worrying will continue the rest of my life so I must make a change and do something for myself.

Wolfram syndrome is just a diagnosis of lifetime worrying: diabetes, kidney failure, deafness, blindness, and paralysis; it’s like a never-ending story. The worrying began for me at age seven and only became worse as of today: food, glucose levels, seizures, kidney/bladder infections, gastro paresis, sanitary conditions for catheterization as well as visual and hearing difficulties. I made a pact with myself to stop worrying about making others worry and try to broaden my horizon by enjoying life. It all starts with the first decision I have made, on my own behalf, of moving out and getting a place of my own. Sure living on my own will be difficult at first, but life as a whole is difficult and coping is something I have done since the beginning.

In the end, I will be able to boost my confidence by saying, “living on my own is a possibility and I am proving it.” Increasing awareness and funding research at Washington University in St. Louis is a fantastic venue but today I must rely on myself to slow progression as much as I can through fitness and nutrition while I experience the now. However, if living on my own does not work out I give everyone permission to say “I told you so.”

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What It’s Been Like – Living With Wolfram Syndrome

Hello, Hola, Tung, Ciao, Bon Jour!

Photo of Lauren Gibilisco, Wolfram syndrome patient

In honor of the upcoming St. Patrick’s Day holiday. This was me from last year.

Recently I was contacted by someone who works with me. Her nephew’s girlfriend needed to write about someone with a disability. Of course she thought of me. Who better to pick from then someone with more than one disability?

I received a phone call from her and she introduced herself and told me what she needed for the report. I told her I had Wolfram syndrome. Her first questions were at what age I was diagnosed which I said was 12 when I was finally diagnosed with Wolfram syndrome but had diabetes mellitus at age 2, hearing loss age 5, vision loss and diabetes insipidus age 11.

She wanted to know if I had been treated differently by anyone because of my disease. I told her yes. In High School the teachers were great and made accommodations that I needed. I only had a few friends in high school. A lot of kids thought I was faking. They were nice to me but only a few went out of their way to help me. No one offered me rides home and to go shopping or to go to school activities. I was home alone a lot. You see my disabilities weren’t VISIBLE. They didn’t know how much was wrong with me because all the problems were inside of me. If I had lost a leg then people can see and will help you. They didn’t know all my problems with choking, ataxia, heat intolerance, seizures, fatigue, bladder issues, hearing loss, vision loss, etc. All of these problems at that time were invisible. Then in college I didn’t start using my cane until my last year. It wasn’t that I couldn’t see some but had become adept at counting doors, counting steps and feeling my way around. My Human Service Director thought I was even faking because I could do things so easily. I was able to have my text books downloaded and had computer software then read me the words. In spite of my disabilities I was able to have been ranked 8th in my high school and was a member of Phi Theta Kappa in college.

I told her about the lack of research when I was first diagnosed and now how much research is being done in St. Louis with Dr. Fumi and his team. When I was diagnosed there was very little written about Wolfram syndrome. My mom spent hours on the computer researching it and was able with another Wolfram parent to start the very first web page with a support group. It was how we were able to meet more people. I also told her that now I have several friends from all over the world. They are in England, Spain, Switzerland and Italy, Canada, Australia and of course the US. What is great is that I can actually see them and talk with them through Skype. It is fun talking to them although their accents sometimes make it difficult to hear. I also told her about the Snow Foundation and my blogs on their website so she could read them and get a better feel of who I am.

I told her of my desire to be a cop but I didn’t think they would give me a car or gun since I am blind.   When I was younger I had different dreams for myself but sometimes you have to change your dreams to fit life.

She asked me how I am doing now in my life. I said “As far as I see”, I am doing well. Haha.

Goodbye, Adios, Tung, Ciao, Au Revoir

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Are You Trigger Happy – by Adam Zwan

How to Avoid Trigger Foods

Trigger FoodsPortion distortion is one of the many reasons for the rapid increase in obesity among individuals in the United States. One category of food that people tend to splurge on is called trigger food. Trigger foods are those that individuals go to when they are multi-tasking. For example, while watching a movie, reading a book, working on a computer, or studying for an exam a person may have a snack item at their side and by the time he or she pays attention the entire bag has been eaten. Depending on a person and their taste buds, trigger food may include chips, candy, popcorn, trail mix, cheese cubes, and list goes on.

There are no bad food groups or bad foods just improper serving sizes. The good news is that trigger foods do not have to be eliminated from one’s diet; they should just be eaten in the right amount. Luckily, many methods can be practiced to eat more mindfully. For one, take your chosen trigger food and measure out a single serving and then placed the remaining food back in the pantry or fridge. In turn, a smaller amount will be eaten and a limited amount will cause a slower eating pace, which will also help with healthy metabolism.

A popular method in defeating trigger foods is when grocery shopping, shop the perimeter of the store. Fat, salt, and sugar are the three taste good ingredients, which is why manufactured products all contain one or a combination of the three giving snack foods an addictive quality. By staying on the perimeter of a store a person is less likely to buy trigger foods and have them in the household increasing temptation to overeat. Also, shopping the perimeter increases the ability to substitute trigger foods with fresh fruits and vegetable. Instead of having an entire bag of chips while multi-tasking have an apple; now, a bag of chips is defeated with healthier item.

As a Wolfram patient, controlling diabetic glucose levels is extremely important when slowing nerve damage. Trigger foods can easily boost glucose levels, so eating more mindfully can promote controlled diabetes. Limiting and substituting trigger foods has proven to be a valuable lesson in living healthier and increasing the quality of life.

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Run for Wolfram 5K

Members of the St. Louis community came out to support the Snow Foundation on Saturday, May 30th for a 5K Run to help raise money for Wolfram syndrome research.  The day was kicked off by St. Louis Cardinals very own FredBird who started the race. Attendees enjoyed Dewey’s pizza, Kona Ice and two gigantic bounce houses.  A huge thanks for our sponsors, volunteers and runners!  The race raised nearly $8,000 which will go towards mouse trials beginning in June.

The results of the 5K race can be viewed at:

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Rare Disease Day and Francis Collins Raise Awareness For The Snow Foundation

Last week, in honor of Rare Disease Day, the Snow Foundation was interviewed by the St. Louis ABC affiliate, KDNL ABC 30.

The story focused on Stephanie Gebel and her fight for a cure for Wolfram syndrome and to revolutionize the diabetic world. Here is the story featured on the Jamie Allman Show.

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