Cystic Fibrosis and a really good hot dog!!!

If you are local you have an opportunity this weekend to help Cystic Fibrosis.

Cystic Fibrosis is a genetic condition that causes thick, sticky  mucus to build up in the lungs and digestive system. Without treatment, this condition is fatal. Luckily, there are now many wonderful treatments and medications available that allow people with CF to live healthy, normal lives.

However, the current median life expectancy is still only 37.4 years. Scientists are coming closer and closer to finding a cure for CF -- just this year an exciting new drug was submitted for FDA approval that "fixes" things at the cellular level for people with a select group of CF mutations -- but they need more help.

Here's how you can play a part...

This Saturday, November 5th, there is a run right here in Provo. The Cystic Fibrosis Foundation is hosting "The Dawg Run," a 2.2 mile run from Provo High to J-Dawgs and back. 



Registration is at 10:30 a.m. and the run is at 11:00 a.m. 

The price is $20. Proceeds go directly to the CF Foundation to help scientists find a cure for CF.


Here's the great thing about this race: Participants will run to J-Dawgs, actually get to eat a J-Dawg, and then run back.
(This cracks me up!!! I think this is a great idea though -- think of the other venues you could do this with for fundraising. I can think of a few places I love to eat at enough that I might be willing to run there just to get to eat! Cupcake shop next time anyone?) Running and eating -- brilliant. 

All of the info above I received from my sweet friend Sarah, whose two-year-old daughter Madeline suffers from Cystic Fibrosis. Just like anyone else who deals with this on a personal level, I know she would appreciate any support you can give this event and this really good cause.

Plus, ....you get a J-Dawg!!! If you haven't had one -- you should!

Spread the word!

If you want to participate, go here for more information. If you like the idea of helping but not the idea of running, you can donate directly to the foundation on this page.

Jimmy Button - Miles for Miracles

Yesterday kicked off the beginning of a $1M fundraiser for Spinal Cord Research.

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Miles for Miracles:

Former Motorcross Champion Jimmy Button and his trainer Cory Wolf will be riding bicycles 2428 miles from San Diego, CA to Daytona Beach, FL in order to help raise money for Spinal Cord Research.

The ride will take nearly 2 months and they hope to raise $1 million.

Jimmy has first-hand experience with this after his crash in 2000 left him with a pinched spinal cord and was considered an incomplete quadriplegic.

You can join their foundation Road 2 Recovery and their efforts to help more people like Jimmy find help with recovery.

If you are interested in their complete story go here.

If you are interested in donating to their cause, go here.

Ovarian Cancer Research Fund

Kelly Ripa and Electrolux have teamed up to help raise money for the

Ovarian Cancer Research Fund.

Best of all, you get to help and it's easy!

Go here and build a virtual banana split.

Every day you do, Electrolux will donate $1 to the Ovarian Cancer Research Fund

for a maximum donation of $40,000.

It takes just a minute.

You can also create and send a virtual cake here.

This is this month's featured cake. You can send this one or make your own.

Every day you do, Electrolux will do the same --

donate $1 to the Ovarian Cancer Research Fund.

If you'd like to donate directly to the Ovarian Cancer Research Fund you can do so here.

Conner and Cystic Fibrosis

I don't even know how to write this one so I guess I will just begin...

I want to introduce you to Conner and his Mom Sarah.

Conner lost his battle with Cystic Fibrosis a few days ago. 

He passed away on June 24th.

He was 7 years old. 

He also had a rare disease called Prune Belly Syndrome.

He is the only person to have ever been diagnosed with those two diseases together.

Here is a bit of info regarding Cystic Fibrosis from his Mom's blog:

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

• clogs the lungs and leads to life-threatening lung infections; and
• obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

He had smaller than average lungs due to the Prune Belly Syndrome and also lacked any abdominal muscles.

You can see how this would complicate a disease like Cystic Fibrosis.

Sarah has a blog that she has used to document her struggle and determination to save her son and to help bring CF awareness to the forefront. 

You can go here to read her entire story and learn more about her and her amazing son.

It is powerful.

It is moving.

I could never do it justice or recapture it.

I wanted to share this story with you for two reasons.

They have suffered personally at the hand of Cystic Fibrosis.

Thousands more suffer every year at the hand of Cystic Fibrosis.

Here are some statistics from Sarah.

CF deaths average:

484 per year

40 per month

9 per week

1 per day

Their story brings to life the reality so many people are living with.

You can go here to learn even more about Cystic Fibrosis.

Here are a few ways you can help.

The funeral service for Conner was held yesterday, but a few people that are friends with Sarah have organized a 

"wear a red-shirt day" 

to show her and her family love and support.

So, today, wear a red shirt.

Take a picture of yourself in it and send it to me. 

I'm going to send them on to her friend that is organizing a large group of photos as a surprise. 

Thousands have already been invited to participate.

We hope she feels loved and buoyed up during this difficult time.

A fund was started by another CF mom to help cover the cost of the funeral expenses.

You can go here to donate.

If you would like to further help fight CF consider going here...

to donate towards

 "Great Strides" -- a fundraising walk for the Cystic Fibrosis Foundation to help find a cure.
This particular page was setup by Jessica -- a blogging friend of Sarah's, who also has a personal connection to CF.

Interested in personally participating in Great Strides?
Go here for all of the information.

Or go here to donate directly to the Cystic Fibrosis Foundation.

Sometimes we are able to sit in our own homes, in our own lives, living the day to day reality that is ours and we sometimes forget about the individual who is suffering. We forget about the personal pain -- the one.

But, for someone else,

somewhere...



it is personal.


We need only to find a cause, and then move our feet.

team MAX

I want to introduce you to probably one of the cutest kids ever.

Max.

On March 4, 2010 Max was diagnosed with Acute Lymphoblastic Leukemia.

He is known to his family as Bubby.

He is currently undergoing chemo and fighting the big fight.

This family is an inspiration and remains positive despite their circumstances.

They continue to have faith and hope.

They have set up a foundation called Take it 2 the Max

to help raise cancer awareness and money to help kids and families just like theirs, who are battling leukemia.

Thereare several ways you can help.

This Saturday, July 3rd

they are having the first annual

Take it 2 the Max

10k, 5k, Kiddie K run and Chip/Putt Contest

at Thanksgiving Point.

It will be on the back 9 of the course and the runners will run the cart path.

(This is the first time they have allowed runners on the golf course! This is a great chance to see the #1 rated public course in Utah)

Registration is at 7:00 a.m.

Race starts at 8:00 a.m.

Go here for all of the details.

If you cannot attend, but would like to donate directly to the foundation, you can go here.

Family and friends of Max have also set up a few accounts to help support Max's treatment. If you would like to donate directly to the family you can go to any Wells Fargo Bank or Bank of American Fork. Accounts have been set up in Max's name.

You can also go here to donate directly through PayPal.

Max's Uncle Joe also just finished writing a book dedicated to Max called "Being Different." All profits from the book will be donated to helping Max recover. You can learn more about the book and the author here.

*Small update -- they found a printing company that will print the book for FREE! All of the proceeds will go to helping Max recover. They will print 200 copies and they will be sold at the event this Saturday at Thanksgiving Point for $9.95.

Support the great company, Press Media, that is doing this by going to their site here.

(Plus they started using wind energy to offset the use of electricity in their facilities. Cool.)

If you would like to read more about Max and his family you can go here to see photos, links for ways to help, as well as a link to their blog and their updates on Max.

I know they would appreciate any and all support you can send their way.

They are an incredible family.

And Max, is an incredible kid!

I for one can't even begin to imagine what it is like for a family to go through such a thing.

I hope and pray I never have to, but I hope this family receives all of the love and support they need and deserve!

We love you Max!

Team DeCoy and the Rowley Family

I want you to meet McCoy and Desmon Rowley, brother and sister.

They both suffer from Crohn's disease.

Desmon is also battling Leukemia at this time.

(Desmon is on the left, McCoy top right and their younger brother bottom right)

Team DeCoy (Desmon/McCoy) Foundation 

"Another Day Another Climb"  

has been created to help raise funds for Crohn's disease awareness and research. They are also committed to raise funds for Leukemia research and immune compromised services.

A portion of the charity's proceeds will also be given to help Crohn's and Leukemia patients pay medical bills.

Here is a little more of their story from the website.

 Desmon was diagnosed with Crohn’s Disease 4 years ago.  She has had a long hard battle with Crohn’s and has recently been diagnosed with Leukemia. She has Crohn’s throughout her GI and has taken many medications, and has had many surgeries to help put her in remission. Unfortunately they have all failed, forcing her to battle both, Crohn’s and Leukemia at this time. 

    A couple of weeks after Desmon started Chemotherapy her brother McCoy was taken to the Emergency Room at the SLC Primary Children’s Hospital where Desmon was having Chemotherapy. There he was diagnosed with Crohn’s Disease. My sister, their mother, got the call from the ER just downstairs from where she had been staying with Desmon. This was another mountain the family has been asked to climb and they not only have done it with great courage, but also with grace.

If you don't have plans this weekend, you can now.

On Saturday, June 12th, 

Team DeCoy Foundation will be holding a few fundraising events.

The first is a 5k & 1 mile fun run 

sponsored by Mountain Aire Market

It will be at:

 Cedar Ridge Elementary

4501 W. Cedar Hills Dr.

Cedar Hills, UT

Race packet pickup and registration 7:30 a.m.

1 mile start time 8:30 a.m.

5k start time 9:00 a.m.

You can go here to print off a registration form or register online.

The cost is $15 pre-registration ($20 day of race)

T-shirts will be given on a first come first serve basis. 

Post race refreshments will be provided.

For more information contact Dave or Holly at (801) 796-6221 or go here.

Wait! There's more!

After the run, there will be a market with vendors and food.

There will also be a 

Silent Auction, Car Wash and Bake Sale

at Heritage Park

4450 West Cedar Hills Dr.

from 10:00 a.m. until 2:00 p.m.

Proceeds from these fundraising events will go toward medical bills for the Rowley family, Crohn's research, and helping the SLC Primary Children's Cancer Wing make a cancer patient's stay a little bit brighter.

If you can't attend any of the fundraising events, but would still like to donate to the Team DeCoy Foundation go here.

You can also sign their guestbook and leave them a message.

Or, you are welcome to leave them a message here and I will be sure to pass it on.

To the Rowleys,

We've never met, but I love you.

This is truly, one beautiful family.

all images via TeamDeCoy Foundation

June is Clean Air Month

I was unaware.

Apparently, it is the month to focus on cleaning up our air.

The American Lung Association sponsors Clean Air Month to work toward the goal of fighting air pollution so elderly and those with asthma and chronic lung diseases can breath easier.

They ask you to:

Drive less

Use less electricity

Refrain from burning wood or trash

Get involved

They would like you to participate in your community's review of it's air pollution plans and support state and local efforts to clean up air pollution.

To find your local air-pollution control agency go 

here to the National Association of Clean Air Agencies.

You can also go here to the American Lung Association.

OR

If you're local, go here to the American Lung Association in Utah for current information and efforts concerning this community.

{If you're not local just google your state -- it should be there.}

Go here to learn about some of the creative ways you can donate to the American Lung Association.

(Did you know  you can donate to them by using Shutterfly and by selling and buying on ebay? Who knew?!)

For the month of June, try choosing just one of above-mentioned ideas.

I think I will try using less electricity. 

If I could just get my kids to turn off the lights when they leave the room, we'll be good to go.

{Is it just me, or does anyone else's children do that? I swear I can remember my own parents saying something similar.....I'm not sure.}

Happy Clean Air Month!