Actelion Pharmaceuticals Video

Actelion Pharmaceuticals LTD produced a video about two families on how Niemann-Pick Type C (NPC) has impacted their lives. Hollie Carter and Annie Pyne are the children that are featured in this video. Like myself they both are living with NPC.  As you watch this video please note that NPC can appear at anytime in a child's life and in completely different ways.

Thanks for watching.


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

Fabulous Fourteen

For the past 23 years the Dubuque Dragon Boat Association (DDBA) has held the Dubuque Dragon Boat races at Miller Riverview park on the Mississippi River.  The DDBA is a non-profit organization dedicated to the promotion of paddle sports and dragon boating in the tri-state area.


The dragon boat festival gives the Dubuque Dragon Boat Association an opportunity to bring people together from different cultural. Not only does  DDBA promotes cultural exchanges between foreign and local teams it also teaches the public the Asian culture associated with the dragon boat festival. Plus it's super fun!

The festival seems to always fall on my birthday weekend so my mom's family thought what a wonderful back drop for a party. So now Miller park has become home to my birthday parties.

There are lots of kids that come down for my birthday so my mom has been getting a pinata for us to enjoy.

I of course get the first crack it.

Here my Mom and I are trying to see if it's the right height. 
Looks just right don't you think?

Look right on target!

Once I got a few warm up swings in I let the other kids try.

 What fun would it be if I broke the pinata on the first swing?

All the kids got a swing or two in before my sister knocked it down, but no candy came out.

 

She left that for me! So back up Scooby went

and with one swing out came

the candy.

 Rach wanted some candy, but she wasn't getting any of mine! 

 Next came the cupcakes in my favorite colors. Yummy!

We couldn't get the candles lit because of the wind.  So we sang to Happy Birthday to ME and  dug in.

Lastly, and my favorite part, the gifts. 

While I have a nack for gift opening, I let the other children help me.

Once all the presents were opened I was ready for a nap. So off I went!

My birthday was filled with love, laughter and best of all gifts.  Thanks for all the birthday wishes. I can tell already that fourteen is going to be a great year.

Build a funding platform to promote rare disease research for kids.

This year Pepsi is giving away millions of dollars to fund good ideas that make the world a better place. Global Genes has a good idea that will dramatically help millions of children affected by rare disease, and can win a $250K grant that will allow them to fund this important effort! So they need your vote.  It started September 1st and you can vote until September 30th.

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Please check it out and vote. Thanks!

I could watch these guys all day

The best thing about a holiday, other than no school, is a parade. I love all the neat old cars, the big rigs and who doesn't love a band playing Louie Louie? Oh and how could I forget all the things that they throw at you when your on the sidelines. There's stickers, pencils, pads of paper, and of course best of all candy.
 (Watch my neck, somehow I acquire more leis)    

After all the people cleared out my brothers and sisters took off to ride the rides.  So us men supervised.

I got kinda hungry so Drew and I shared some crackers.

And then we shared my chair.

Overall it was a fun day watching the people, the parade, and enjoying time spent with my family!