WALK FOR WISHES....A SUCCESS!!

Tylor and Cale waiting for the walk to start

Sunday was the 1st Annual Walk for Wishes, a fundraising event for Make A Wish. Most of you know that Tylor was granted his wish in December 2008 to meet Brett Favre. Make A Wish is a organization we always donate to because they do such great things for kids suffering from deadly diseases and illnesses. Walk for Wishes was a great way for Tylor's families to show their support for future wishes and get some exercise in the process.

It was cold waiting for the walk to start but once we got going it was beautiful out. Sy started pushing Ty first and I think they thought it was a race, it took me a little bit to catch up with them. It was so neat to see all the green shirts walking going down the street. The Walkin' 4 Tylor team had over 50 people walking!! We got quite a few honks throughout the morning.

2010 WALKIN' 4 TYLOR TEAM



Gabby, Tylor and Sam after the walk

When we finished the walk we were greeted by Make A Wish volunteers...Ty gave them a big high five. When most of the walkers got back it was time for the awards and to find out how much we raised. The volunteers talked about how Make A Wish impacts families suffering with illnesses and diseases. They explained that the average wish costs $9000. Make A Wish of Iowa granted over 266 wishes in 2009. Then for the total raised that day....drum roll please between sponsors and walkers the final total was over $32,000!!! HOW AMAZING.

I know you are probably wondering if the Walkin' 4 Tylor team won anything. Yes we did! We won the award for the Largest Walk Team. We didn't win for the most donations raised but we did pretty good, with online donations and donations turned in that day we were close to $1800!!

We want to THANK our sponsors WHITE CONSTRUCTION, WAGNER'S NURSERY, NATIONAL NIEMANN-PICK FOUNDATION, PEGASUS PROPERTIES, BAUER CONSTRUCTION, KNICKER'S SALOON, ELITE OUTDOORS UNLIMITED, TRI-STATE SCREEN PRINTING, TRI-STATE TRAVEL, CAPRI COLLEGE, AND OPALUS SALON.



Tylor resting after the big walk





Are you ready for the Challenge???

Take the NPD 10 – 10 – 10 Challenge!

Please Help Raise Awareness for Niemann-Pick Disease

Intriguing dates such as 10/10/10 don’t come around all that often, and it seems fitting to proactively observe this once-in-a-lifetime occasion, especially since it falls during

October National Niemann-Pick Disease Awareness Month!

Participating in the NNPDF Central Office Challenge and showing support for the many families coping with Niemann-Pick Disease is one simple way you can mark the day by making a positive difference. With just a few minutes of your time, you can help raise awareness and funding for all whose lives are affected and cut short by Niemann-Pick Disease.

Our 10-10-10 Challenge is to get 300 people to share information about Niemann-Pick Disease with 10 other people, via email, Facebook, Twitter, or other means (even via the hospitable old-fashioned way, face-to-face!).

Spreading the word about this rare disease is key to raising the essential funding for research which will find the treatments and cure we all work fervently toward, and to providing important family services for those who rely on us.

Here are some simple ways you can help families affected by Niemann-Pick Disease on 10-10-10:

1.Create awareness of NPD by forwarding this message to 10 (or more) people in your email address book.

2.Post this message (or your own message about Niemann-Pick Disease) to your Facebook page or blog. Post a link to the NPD Awareness Facebook page (click the Facebook icon on the NNPDF Home page at www.nnpdf.org).

3.“Tweet” about NPD and share the NNPDF Web site address: www.nnpdf.org

4.Take a group of friends out for coffee or dessert. Tell them about NPD and the devastating effect it has on families. (We will be happy to supply newly updated brochures for your use, just contact us.)

5.Donate $10 for NPD on 10-10-10 and encourage your friends and family to do the same. Most of us spend at least $10 a week on discretionary items (snacks, soda, a movie, fast food). Ten dollars doesn’t seem like a whole lot of money, but when many people each give ten bucks, it adds up! Donations may be mailed to the address above, or made online via our Web site: www.nnpdf.org.

6.Encourage 10 contacts to check out our NNPDF October Awareness Online Auction! Bid high, bid often! http://www.biddingforgood.com/nnpdf/2010

Thank you very much for your help and continued generosity, on 10-10-10 and always! Those who live with the challenges of Niemann-Pick Disease need and truly appreciate your kindness and support, today and until the cure is found. Together, we will Persevere in Our Quest for a Cure!

Together, we can make a difference!

October is National Niemann-Pick Disease Awareness Month

Please help us maximize this opportunity to raise awareness and funds for vital research!

Shop the NNPDF Online Auction!

Can you hear me know??

Most of you know Tylor will lose his ability to walk, talk, eat, and breath on his own. So it is very important to get Tylor's hearing and vision checked on a yearly basis. Because of Ty's low communication ability he we wouldn't be able to tell if his hearing or vision was going bad. This past week it was time for his hearing test and he passed with flying colors. Jenny, who does the testint, is so good with him. I was a little worried half way through the test because he stopped telling her when he heard the beep so she had him repeat words back to her. She said that he could repeat her perfectly after hearing the word in a faint whisper, which means you have to have great hearing to hear that low. So we figured he was just getting bored with the first test and stopped responding. After the hearing test we went upstairs to see Dr. White. He checked his ears, nose and throat and was pleased with how everything looked. So unless something changes we will see him in a year.

Ty finishing his test

Could Cyclodextrin be one step closer?

By Amy Dockser Marcus


We’ve been following the efforts of one family, the Hempels, to draw attention to the potential of cyclodextrin, an experimental drug that may have potential against a fatal neurodegenerative disease called Niemann-Pick Type C.

Addison and Cassidy Hempel, twin six-year-old girls, have the disease, and their parents were part of a larger group that earlier this year successfully got orphan drug designation for the compound from the FDA, a key first step for drug development in rare diseases.

The FDA this week gave permission for cyclodextrin to be injected into the spines of the girls. They’ve been receiving the drug intravenously for over a year but new research indicated that it does not cross the blood-brain barrier.

Chris Hempel, the girls’ mother, tells the Health Blog that the family pursued the new approach for delivering the drug in the hopes it will get into the brain and stave off some of the neurological decline associated with NPC. She also hopes that the information they report to the FDA may help bring cyclodextrin one step closer to a trial.

A spokeswoman for the FDA says the agency can’t comment on drugs under agency review or on any individual’s private medical information.

It isn’t easy to get clinical trials going in children with brain disorders. The Children’s Neurobiological Solutions Foundation held a meeting last week with clinicians, researchers, advocates and others to discuss some of the barriers, including the potential risks to participants. (Those can leave drug companies and hospitals skittish.) The foundation is trying to create a national network of sites in the U.S. that will collaborate on setting up trials for pediatric brain disease treatments.

The NIH held a workshop on developing therapies for NPC disease earlier this year. Cyclodextrin played a prominent role there too. A working group of researchers and clinicians has been discussing what scientific questions need to get answered before a trial could be launched.

Hempel tells the HealthBlog that she hopes this latest FDA decision will help propel larger efforts to start a trial. “The biggest hurdle for a trial is showing something is safe,” she says. “If we show this works in the girls, we hope a broader trial can start for kids with NPC.”

Thank you to the Hempels for all their hard work and PERSEVERANCE!! We love you Addi and Cassi.

National Niemann Pick Online Auction

With Niemann Pick Awareness Month right around the corner I wanted to let you all know that the National Niemann Pick Disease Foundation (NNPDF) is having an online auction to help raise money for research and to help families who have children with Niemann Pick Disease. The NNPDF has been a great support system for us. We have meet many great people through the foundation and it comforting to know you can talk to peolpe going through the same things your are.

Please take a moment to visit the online auction and please bid generously!! There is a Brett Favre signed Viking jersey donated from the Brett Favre 4ward Foundation in honor of Tylor. We wrote the 4ward Foundation after Ty met him asking if he would donate something to either the Make A Wish foundation or the NNPDF. About six months went by and we didn't hear anything and then the NNPDF calls me to ask about the Favre jersey they received. I was so touched that Brett did that he is truly a giving man. Thanks Brett!!

Help spread the word!! October is Niemann Pick Awareness Month

October is Niemann Pick Awareness month and we are asking for your help to spread the word. Recently Actelion Pharmaceuticals LTD interviewed two families that struggle with NPC everyday. Actelioin Pharmaceuticals LTD has been working with the National Niemann Pick Disease Foundation to get FDA approval for Migulstat (Zavesca), the experimental drug Tylor is taking to help slow the progression of NPC.
This video shows how differently NPC effects each child. But most have the same horrible beginning....the time it takes to figure out what is going on with your child. This is where you can help! Spreading the word will make people more aware of NPC which in turn with help in raising money for research. There are great doctors and scientists working to find a cure for NPC but this all costs a tremendous amount of money. The NPC families contribute what they can but we need your help to save our kids lives. Please help by passing this on to family and friends and ask them to do the same.

Summary edit of the Hollie and Annie films from sue lowe on Vimeo.

AFO casting

Last Friday Ty got casted for his AFOs. I wasn't for sure how it was all done so I told Ty if he was good and did what Pat told him to do we would be in and out of there. He was pretty tired because they had spirit day at school so he was outside most of the day! After the paperwork was done we headed into the casting room. 

Tylor waiting for Pat

Casting supplies

First he put a sock on Tylor that he marked where the brace need to start and where his ankle bone is and other bones in his foot. Then they use two packages of cast material, they dip it in water and start to wrap the leg from where the brace starts and work their way down. Under the casting they place a long tube to cut along after the cast is set. This way when they remove it they won't cut the patient. After they get all the casting on they rub over the outside and make sure the foot stays flat. It only takes about 3 minutes for the cast to form then it is time to cut it off. Tylor didn't mind the cutting of the cast but he hated when he cut the sock with a scissors. He kept saying ooch and wrinkling his face. I didn't hurt but I think the thought of a scissors cutting along your leg bothered him. 



Pat marking Ty's casting sock

Starting the first cast, see the long tube

First cast done, way to go Ty Bug

There it is...I told Pat we need to use these for Halloween!!

Working on the second cast

See what I am talking about, look at Ty's face!