I know, I know….I haven’t caught our journal up in a LONG time. My apologies. In reference to the ever famed cliché “No news is good news,” this applies for our Bridget. We’ve floated through summer and are now embarking upon a new school year. Needless to say, I will update you on our Foundation and summer. We have recently contributed funds to two researchers in the field of Late Infantile Batten disease (NCL). The first donation from Hope 4 Bridget was for $16,000 to Pearce Labs for Genetically Inherited Diseases for Children at Sanford Children’s Health in Sioux Falls, SD. Dr. David Pearce is working on a project which develops the methodology for using high-throughput screening assays in INCL and LINCL. High throughput screening uses advance robotics and technology to screen over 100,000 compounds to determine if there are any novel drugs that create new pathways of interest for treatment. It is a drug re-purposing project and one in which could be extremely helpful in finding an existing drug to aid in the treatment of Batten disease. We have had the privilege of meeting Dr. Pearce at last year and this year’s BDSRA conference. We look forward to the progress that he and his associates are making. Our second contribution from H4B in the amount of $25,000 was given to David Sleat, Associate Professor of Pharmacology, who works with Dr. Peter Lobel from the Center for Advanced Biotechnology and Medicine at Rutgers University. Their study focuses on creating a transgenic mouse that can withstand the human protein TPP1, which children with LINCL are lacking. Currently, the mice used in the experiment cannot withstand repeated dosing of the enzyme . If this experiment can be achieved, they can further their research of LINCL using repeated doses of the enzyme to treat and possibly cure the disease. It would be a significant breakthrough to achieve this. I seldom refer to the current research and scientists, but think that these two projects are significant. We continue to raise funds and awareness to help achieve such goals. There are others out there that continue to study and create experiments in order to understand the disease. I do the best I can to take in all the medical information. So hopefully, it is clear that we forge ahead in the medical world as we do each day in our own little one.

Luke's Summer Bash for Bridget

Luke's Summer Bash for Bridget

Bridget had a wonderful summer. We went on walks in her awesome stroller (aka, “The Covered Wagon”), took trips to the park district pool, sunk our toes in the sand on the beach in Michigan, attended Harrison’s baseball games, slept in (esp little Miss B), and vacationed with our families- cousins and all. It all began with a Summer Bash in honor of Bridget given by our dear friends, the Tepas family. Luke, who turned three, was willing to share his special day with Bridget and used his birthday as a vehicle for charity…the Hope 4 Bridget kind. We are so blessed to have met and befriended the Tepas crew. We are grateful for their generosity and spectacular summer party. We look forward to many more fun times with them and all the other families we met that day!
4th of July

4th of July

Another summer gathering on the Fourth of July was a bittersweet get together. The VanHoutan family welcomed us into their new home along with the Gahlbecks and Duinstras. We have such a strong connection to one another because of our circumstances. And, we really enjoy one another’s company. On the bitter side of things, it was a send off for the Duinstras. They will continue their fight and fundraising back in their home country, the Netherlands, for Jasper Against Batten. Their family will be in our hearts and we know we will see them again. Later in July, we made the trip with VanHoutans and Gahlbecks to Minneapolis for the annual BDSRA conference. It was a worthwhile trip and comforting being with one another.
Covered Wagons Circling

Covered Wagons Circling

Kerry Hughes and Lori Butler deserve huge shout out for putting on the extremely successful, Rock for RARE Disease concert at Trace Bar. We had nearly 130 people attend to come listen to Jesse Malin and the St. Mark’s Social. It was a flashback being in Wrigleyville and I have to admit, we felt a little mature. But, it was a rockin’ good time with people of all ages (my parents, too)! We raised lots of money for Hope 4 Bridget. Thank you to all who attended! We rounded out the summer with our annual trip to Uncle Mike’s with family and more family, only to do it the following weekend as well! The Jensen clan took a summer vacation to Oxford, WI complete with 2 cabins, Grandpa’s fishing rods and a trip to the Dells. It was a very special weekend full of action- eating, drinking, laughing, sleeping, fishing, swimming, and of course, driving. Did I mention laughing?
One Tough Chick

One Tough Chick

I was in my office the other day looking up at the new fluorescent light covers I got this summer. They’re kind of magical- views of the sky with puffy, white clouds sailing by (some of the new 1st graders think they’re real). The view makes me feel like I’m floating. And that really sums up the past three months. I hope we continue to float as
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our new school gets underway and Fall comes to our doorstep. As I was finishing up painting Harrison’s bathroom, I looked down at the newspaper underfoot. This is what my horoscope read, “Turn off your mind, relax and float downstream. Steal quiet moments to prepare for the intense energy ahead.” I try to steal these moments everyday with my Bridgey as we snuggle on her table or the sofa each night. I just want to keep afloat with her on our quiet, calm water. God Bless.

6 thoughts on “Floating

  1. Sara,
    Thank you for sharing your wonderful summer. I am thrilled it was a good one for all of you and I will pray that this continues for a long time.

  2. Thank you for sharing such an eloquent journal entry. You are always in our prayers! Love, The Shannon Crew

  3. Hey guys – glad we got to share a fun summer with you. Can’t believe it is over and school is here. You remain an inspiration to a lot of people…your strength, your faith, your “not gonna slow us down” mentality…gives a reason for people not to complain or bitch about much. Just wanted to say thanks.

    Lets have a good fall season. One day at a time.


  4. It is so strange that you should update the site yesterday. For some reason, your family was on my mind so I checked to see if you had an update. It must have been right before you put up the new post. I guess there was a reason you were on my mind :) Much love to all of you!!!

  5. It is just fantastic that all of you were able to enjoy such a wonderful summer! Keep floating and dreaming of all the good times!

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