Tuberous Sclerosis Walk

The annual Step Forward to Cure TSC walkathon is scheduled for May 30, 2009 at Lake Phalen Pavilion in St. Paul. Thank you for all the support in the past and we look forward to another exciting year raising funds to support the goal: a cure for TSC!! Click on the TSA image to learn more.

Corporate Sponsors

Just wanted to take a minute to thank all our corporate sponsors to date.

Corwin Chrysler-Dodge
All-Brite Signs
Don Smith Photography
Pediatric Therapy Partners
Eide Bailey - Fargo
Grace Lutheran Church
State Bank & Trust (Pay it forward)

FAQ

One of the most common questions people we know ask us about the Journey For Jess is if we are all going. Yes, we are all going. Initially we thought that Noah would go with us for part of it and then stay with his grandparents the rest of the time, but once we started trying to work out the logistics of transporting him back and forth we realized that it would be better for him to be with us for the whole trip. This has caused us to re-think some of our lodging options as we were planning to have a couple of nights sleeping in the back of the Journey which isn’t going to work now that there are 3 of us. We also needed to find a few places that are more Noah friendly and that will allow us to shower every few days and maybe do some laundry. So depending on the prevalence of bears and other wild animals we have updated some of our accommodations to include walls. (and bathrooms and swimming pools, although that has nothing to do with wild animals) We are sticking with the original budget amounts, which are based on sales of merchandise, so that Amy and I are covering any additional expenses incurred from upgraded lodging. As a reminder, all sponsorship money is being split between the charities. Only money from the sale of merchandise helps pay for the costs of the trip.

Journey For Jess brochure

Here is the inside of the brochure we had made for the Journey For Jess. It is a trifold flyer that details the reason for the Journey For Jess and what we are trying to accomplish. On the back is a form that can be filled out and mailed in for people who are interested in donating. We also have 5 page full size clear cover folders that we are using to give to businesses to try and get them to donate.

We need your help. If you know of businesses or individuals that you think would be willing to sponsor us please let us know. We can either get you the brochures and you can talk to them, or you can get us their information and we can either contact them or mail them the information.

We will be using this blog and the http://www.journeyforjess.com/ website to provide frequent updates while we are on our Journey (which is less than 2 months away).

We feel that our best oppurtunity to raise money for the Epilepsy Foundation and TS Alliance will be while we are on the road. We have contacted numerous media outlets who will be running stories about the Journey For Jess and we hope to create some 'grassroots' type buzz by having friends tell friends and having everyone checking the blog and website for updates. The more people we get to follow us on our Journey the greater the difference we can make for people affected by seizure related disorders.

Ready To Go

All of my testing is complete and I am ready to tell people about my new blog. I wanted something that would be easier to update than the website and my photo blog are. With Blogger, I can post pictures and video through either my cell phone or by email. It is unbelievably customizable and super easy to use.

As soon as I figure out how to post a picture of a .pdf, I will add a post showing you the Journey For Jess brochure and asking for your help raising money.

Test posting photo by email submission.

I am trying to post a photo through an email submission.  The text emails work so we will see if the photo works.

 

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Newsweek Article

Dear Friends,

I don’t know if you saw the April 20th issue of Newsweek magazine, but the cover story was “The Mystery Of Epilepsy – Why We Must Find A Cure”. While I’m not exactly sure what the cover picture is, it could just as easily have been a picture of Jess or any of the other estimated 50,000 people who die each year from seizures and related causes. They are the reason why we must find a cure.

More than 3 million Americans are affected by epilepsy, more than number affected by multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined yet funding for epilepsy research averages only $35 a patient. (compared, for instance, with $129 for Alzheimer's and $280 for multiple sclerosis). As the author, Jon Meacham, states, “It is time to remedy that gap, and to raise epilepsy to the front ranks of public and medical concern.”

The reason that epilepsy research funding is so low seems to be based on public perception. People think that epilepsy is not a deadly disease. We know different. People think that epilepsy can be managed through drug therapy, and while that is true for about 2/3 of people diagnosed with epilepsy it is not true for over 1 million people. Individuals with epilepsy may not have daily or even monthly seizures, but the fear of a seizure is constant. Epilepsy is not always visible to the public, but as we saw with John Travolta’s son Jett, a seizure in the midst of an everyday activity like taking a shower can be deadly.

Jess’ life and death showed us the reality of epilepsy. There were good days and bad days. We were always going down on one medication and up on another, following the charts made by Dr. Ritter. There were surgeries, hospitalizations, MRI’s and ECG’s. There was hope and despair. In the end she was taken from us by a seizure in her sleep that kept her brain deprived of oxygen for a prolonged period of time.

That is why our goal with the Journey For Jess is to raise money and awareness for people affected by seizure disorders. So that we can fulfill the Epilepsy Foundations motto and make a world where there is “not another moment lost to seizures”.

To see more of the article please go to http://www.newsweek.com/id/193586

The picture that got me interested in photography.

Brother Wolf, by Jim Brandenburg.

If you like pictures of Minnesota, it's beauty and it's wildlife, Jim Brandenburg is your man. His photography, and this picture in particular, got me thinking about taking pictures.

To see more, please visit his website at www.jimbrandenburg.com

Picture practice.

I'm trying to learn how to post pictures.
This was taken near Lake Crystal, MN.

New Blog

Well I am going to try this out. Due to the ease of use of Blogger I am sure that I will use it more than aminus3 or the Yahoo one. Plus I can post pictures and videos from either email or my phone. That will make it much easier to update while we are on the road during the Journey For Jess.