6.18.14 Update & Channel 2 News coverage in Palm Springs

Yesterday, 6.17, I had a great day with Megan. We went to the mall and just hung out. She and Jake will become great friends when they meet in Anaheim!

Did I tell you how BEAUTIFUL Palm Springs and Palm Desert are?!?!

Today Megan, Tiffany and I were interviewed by Channel 2 News in Palm Springs. The interview will air tonight at 5:00 and 6:00 news. Megan did FANTASTIC!
http://www.kesq.com/news/williams-syndrome/26561610

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(I have updated the last post with the morning edition and afternoon edition news clips of the Vegas interviews).

Charlie and Megan.  Great times!  Yeah, I had to get a new bathing suit, mine wore out and tore at the butt seam.

Charlie and Megan. Great times! Yeah, I had to get a new bathing suit, mine wore out and tore at the butt seam.

So much fun!

So much fun!

Goofin off for a pic in Palm Desert with Megan 6/18

Goofin off for a pic in Palm Springs with Megan 6/18

Now for the real pic with the film crew from KESQ Palm Desert and Megan 6/18

Now for the real pic with the film crew from KESQ Palm Desert and Megan 6/18

Megan being interviewed 6/18. She did GREAT!

Megan being interviewed 6/18. She did GREAT!

Hitch has been CHARMED  6/18.  Thank you Tiffany

Hitch has been CHARMED 6/18. Thank you Tiffany

Charmed and Chillin in Palm Desert 6/18.  Yeah, I think I will get a new American Flag.

Charmed and Chillin in Palm Desert 6/18. Yeah, I think I will get a new American Flag.

Tiffany with Hitch, Palm Desert CA 6/18.  Thanks for all the pics Tiffany : )

Tiffany with Hitch, Palm Desert CA 6/18. Thanks for all the pics Tiffany : )

6.16.14 Update and link to KTNV (Channel 13 News in Vegas) interview

This morning channel 13 news in Vegas came to the Jacobs home for an interview. Short segments of the interview will be aired 6/17 at 5 and 6 am and a longer segment at 6pm. Thank you Jacobs family for all your connections to the media industry and Mr. Camera!

The link to the morning news clip is http://www.jrn.com/ktnv/positively-lv/better-lv/19-year-old-bikesruns-across-America-263511881.html
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A longer clip was shown on the evening new – http://www.jrn.com/ktnv/positively-lv/better-lv/19-year-old-bikesruns-across-America-263511881.html

On to Palm Desert –

I want to sincerely thank Megan, her mother Tiffany and especially her grandparents Linda and Charlie. Linda arranged BlackJack Express to give a lift from Vegas to Palm Desert, about 250 miles. This would have been a 3+ day ride over the Mohave or Death Valley. Have you heard? Death Valley is the hottest place on earth right now. I cannot imagine riding it, especially if the wind would be as strong as in Vegas (30-50 mph). I will now admit Hitch and I would not have fared well at all.

Below are some pictures of the arrival with Meg.

Megan welcoming me to Palm Desert CA 6.16

Megan welcoming me to Palm Desert CA 6.16

Megan has a GREAT smile. Pal Desert CA 6.16

Megan has a GREAT smile. Pal Desert CA 6.16

Thank you again!!! More smiley faces!

Thank you again!!! More smiley faces!

Thank you!  Palm Desert 6.16

Thank you! Palm Desert 6.16

6.14.14 Weekend pictures & Channel 3 News in Vegas Interview and Mr Camera Coverage

I want to thank everyone who took time from their busy days to come to the party the Jacob’s hosted. It was a lot of fun! Great food, live music, it was really great, especially see some of you meet each other for the first time! I know you will be life long friends!!!

The links to the interviews on Saturday:

Link to Mr Camera Production Coverage: https://private.filesanywhere.com/Viewplay/linkViewplaywrapper.aspx choose Preview and then the middle one. It will be available for 30 days.
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Link to the Channel 3 News in Las Vegas interview 6.13.14: http://www.mynews3.com/content/video/default.aspx?videoID=5170628
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Here are some pictures of the party, hanging with the Claire (in the pink glasses) and Abby (Claire’s sister), and on set. These are in no particular order after the first 2 : )

party 13

misc 2

party 24

party 23

party 20

party 21

party 18

party 19

party 10

party 12

party 15

party 14

party 17

party 16

party 11

party 8

party 7

party 6

party 4

party 5

party 1.75

misc 1

cake

signs 1

party 2

party 1

party 3

party 1.5

sister 3

sister 2

claire 3

sister

claire

claire 2

party 50

hitch 1

hitch 4

hitch 2

on set

on set 2

6.13.14 Announcement

I will post a link to the interview as soon as it is available.

Clues again were:
1 – Jenny
2- Norman Rockwell was the inspiration
3- “You have to do the best with what God gave you”
4- Feather
5- Life is like a box of chocolates

Norman Rockwell was the inspiration for part of the set. Jenny was his childhood friend and mother of his son. His mother said “You have to do the best with what God gave you”. At the end, a feather is floating in the wind. His momma always said “Life is like a box of chocolates, you never know what you’re gonna get.”

Answer – Movie Forest Gump

That means…… yes, I intend bike to the Redwood Forest, head south to Sacramento and then “Run Forest Run!” home. Goal is to be home before Thanksgiving.

KUDDOS Ladies – Beth Jones was the first to guess Forest Gump and Sherry Drell (Aunt Sherry) guessed I would be running home.

6.13.14 Interview & Last Clue

Yesterday I left the Toias and rode to the Jacobs, about 20 miles. Feels good to be back on the seat. The Jacob’s 2 little girls are soo cute!

The path to watch the clip Mr Camera made is https://private.filesanywhere.com/Viewplay/linkViewplaywrapper.aspx . Again a shout out to Mr Camera for all they have done to make this happen !!!!

The Channel 3 news clip is http://www.mynews3.com/content/video/default.aspx?videoID=5170628

Tomorrow there is a gather hosted by the Jacobs family at their home. Looking forward to meeting more people. Only a couple more days in Vegas then off to SoCal. I will hit 4,000 miles of riding by the convention.

Oh, remember in the beginning of the trip in Kitty Hawk Renee and I became re-acquainted after like 18 years? (And it was soooo hard to leave KH). Well, her mom told her last night she is meeting us in Anaheim for the convention as a graduation gift!!! Happy beyond words!!! She will volunteer in the baby room too.

Last Clue – Life is like a box of chocolates… (your guess just can’t be the one thing, that “thing” is key to what the announcement will be)

http://www.mynews3.com/content/video/default.aspx?videoID=5170628

Pics from the interview. Channel 3 News Las Vegas, NBC affiliate at 11am   6.13.14

Pics from the interview. Channel 3 News Las Vegas, NBC affiliate at 11am 6.13.14

Pics from the interview. Channel 3 News Las Vegas, NBC affiliate at 11am   6.13.14

Pics from the interview. Channel 3 News Las Vegas, NBC affiliate at 11am 6.13.14

Pics from the interview. Channel 3 News Las Vegas, NBC affiliate at 11am   6.13.14

Pics from the interview. Channel 3 News Las Vegas, NBC affiliate at 11am 6.13.14

Pics from the interview. Channel 3 News Las Vegas, NBC affiliate at 11am   6.13.14

Pics from the interview. Channel 3 News Las Vegas, NBC affiliate at 11am 6.13.14

6.12.14 Pics from the time with the Toia’s

I will try to do this in time order.

Opening of the gate at the BMX races 6.6 near Vegas

Opening of the gate at the BMX races 6.6 near Vegas

Meeting Olympian BMX Racer Connor Fields 6.6 near Vegas. VERY COOL!

Meeting Olympian BMX Racer Connor Fields 6.6 near Vegas. VERY COOL!

Hanging with an Olympian. Connor was so nice!  Good Luck Connor!!

Hanging with an Olympian. Connor was so nice! Good Luck Connor!!

With Connor Fields 6.6 near Vegas

With Connor Fields 6.6 near Vegas

Here I am riding the BMX course 6.6.  Surely Levi would beat me!!! Fun...

Here I am riding the BMX course 6.6. Surely Levi would beat me!!! Fun…

Taking the tortoises Shelly and Tucker out for a stroll at the Toia's .

Taking the tortoises Shelly and Tucker out for a stroll at the Toia’s .

The turtle definately weighs more than Hitch.  hahahaha

The turtle definately weighs more than Hitch. hahahaha

Touristing with Levi, Kylee and Tre' in Vegas 6.9

Touristing with Levi, Kylee and Tre’ in Vegas 6.9

Vegas...

Vegas…

Vegas - yup holding hands with Kylee  : )

Vegas – yup holding hands with Kylee : )

Good times in Vegas 6.9

Good times in Vegas 6.9

Fun in Vegas 6.9

Fun in Vegas 6.9

Whadda ya expect? We're guys!  Vegas 6.9

Whadda ya expect? We’re guys! Vegas 6.9

Photo Op in Vegas 6.9 with Tre', Kylee and Levi

Photo Op in Vegas 6.9 with Tre’, Kylee and Levi

What?   And this still is not the weirdest thing we saw in Vegas 6.9

What? And this still is not the weirdest thing we saw in Vegas 6.9

Being touristy in Vegas 6.9 with the Toia family and friends

Being touristy in Vegas 6.9 with the Toia family and friends

With Tre and Kylee 6.12

With Tre and Kylee 6.12

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It would be nice if ALL the roads were this smooth!  Henderson, NV 6.12

It would be nice if ALL the roads were this smooth! Henderson, NV 6.12

I will miss these 3!!!

I will miss these 3!!!

So long Chelsea, TJ, Tre, Kylee and Levi!  I will miss you guys so much!  Thank you!!!!

So long Chelsea, TJ, Tre, Kylee and Levi! I will miss you guys so much! Thank you!!!!

6.12.14 Sad news – Reese

All of us in the WS community are sending prayers for Reese & her family. Reese was given her angel wings yesterday. What a beautiful angel she must be…

Capture

Since I have started this journey I know of 2 that have been given their wings.
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It makes me believe THIS journey is a good one. This journey is raising awareness and $ to help the WSA with their programs to help families and with research. There has to be more research to improve heart conditions!!!
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6.12.14 Funny Story & Clue # 6

So if you have been reading up on Williams Syndrome you know that many, if not all, have hyperacusis (I probably spelled it wrong, it is super sensitive hearing). Really, like Superman hearing.
It is kind of odd, they can sit next to the large speakers at a concert and are totally fine but many every day sounds are terrifying. For example, the sound of sirens, thunder, those blow hand dryers in public restrooms, balloons (even the sight of some balloons will send many into a panic for fear it will pop) to name only a few. Many loud sounds can actually cause them physical pain.

So again, funny and not funny stories about thunder (after all this is thunder storm season)-

“Dom is upset about the storm …
Hubster: Buddy is there something I can do to make you feel better?
Boy Genius: Chocolate. Just chocolate will make me feel better.”

As seen on fb recently – “This thunderstorm made me get eye shadow in my eye”

Clue # 6 – Haley’s first. Only 2 more days and one clue left until the announcement!

Leaving the Toia’s on Thursday. I will miss these guys!!! Thank you so much!!!!

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6.11.14 Funny Story & Clue #5

Had a really great birthday dinner with the Jacob and Toia families. THANK YOU THANK YOU!

Wednesday I need to buckle down and think about the next leg through SoCal. I hear it is really pretty there.

Funny Story – “Hey Mom, does Dr S (pediatrician) know about Peptic Ulcers?” “I am sure he does, why?” (He puts his finger in his mouth and lifts his tongue) “I need him to take a look at this” hahahaha Thank you again TV commercials.

Clue #5 – Stupid is…

There are a few very warm answers (I have not posted) but just need to go a step or two further.

Check out the banner Chelsea's friend made!  Can't wait to put it on the trailer Saturday for the taping

Check out the banner Chelsea’s friend made! Can’t wait to put it on the trailer Saturday for the taping

6.10.14 Funny Story & Clue #4

It was so hot yesterday we ended up not going Kayaking. Had a great time with the Toias sightseeing the touristy things in Vegas!!! Talked to Kate yesterday about the details for the interview on Saturday and the party. Thank you Jacobs family!!!! A shout out thank you to Mr Camera for all they are doing as well!!

Tonight The Jacobs and Toias are taking me to dinner. I am really looking forward to that!!!

If that On/Off button is for air conditioning turn it on!!!  That was the outside temp in Vegas 6.9.  "Its a dry heat so cant be that bad."  Humid or not it is HOT!!

If that On/Off button is for air conditioning turn it on!!! That was the outside temp in Vegas 6.9. “Its a dry heat so cant be that bad.” Humid or not it is HOT!!

This is for my brother Jake, he LOVES NY.  Sightseeing, here at the NY NY hotel in Vegas 6.9

This is for my brother Jake, he LOVES NY. Sightseeing, here at the NY NY hotel in Vegas 6.9

This is for my brother Rob, the magician.  Sightseeing in Vegas 6.9

This is for my brother Rob, the magician. Sightseeing in Vegas 6.9

I am glad M will be a the conference and I will get to meet her! Do you remember her from sometime in April, she was going in for surgery? She has had a rough recovery so please keep her in your prayers.

Funny story, although NOT funny at the time is about me (today is my birthday so I’m allowed). I worked really really hard in school when I was in 3rd grade to read because Dad said if I could read a certain book I could get a go-kart for my birthday. Well June 10th comes, I get the go-cart and within, oh, 15 minutes I hit a telephone pole and broke off the rear tire. Mind you, there are fields and fields to ride in, and I manage to hit the only pole! Not funny then. Not at all. Another one that is sad and funny at the same time. We live on a farm, raise chickens – eat chicken, raise hogs – eat pork, raise cows – eat beef. So I was about 3-4 when our dog died. In all seriousness I asked if we were having Henry for dinner.

Clue #4 – Feather

What?   And this still is not the weirdest thing we saw in Vegas 6.9

What? And this still is not the weirdest thing we saw in Vegas 6.9

Being touristy in Vegas 6.9 with the Toia family and friends

Being touristy in Vegas 6.9 with the Toia family and friends