Pipeline Pics & Wrap Up....

Pipeline to a Cure, 2009, came and went and it was INCREDIBLE. Feel free to click on the label to see previous posts leading up to this one. The event was a huge success, and I'm sorry to my few and faithful blog readers for being so behind in sharing about it. This is going to be a long blog post (so much to share!!!) so get ready for some rambling, hehe :) The event was on July 18th, 2009, and it was an AMAZING night raising a total of $300,000 for Cystic Fibrosis Research!! We had 600 people in attendance at the Hyatt Regency in Huntington Beach, auctioned off some great trips and auction items, enjoyed an evening with Laird Hamilton and Dave Kalama as the hosts and got to hang out with various surf stars in attendance. It was a night to remember and for me, a night that has taken me over a month to really process and pray about because it was such a big night for me.

While yes, it's a dream come true to spend an evening with surf legends and stars, it is much deeper for me as I watch hundreds of people give their money, time and support to research that is so vital to the length and quality of my life with CF, it is one of the most humbling experiences I've ever had. Even now as I type this, tears form in my eyes because I think of the generosity and love that people poured out that night for me and many with CF....It was unreal and I am incredibly grateful.

I was the speaker that night so people not only got to know me, but got to know the REAL me as I felt God had led me to be open and honest about the depth of CF and it's affect on me not only physically but emotionally as well. As an adult with CF, I am truly grateful for the responsibility and joy it is to represent the CF community because as I stood up there and shared my heart for 15 minutes, I knew that the thousands with CF would be benefiting because they too, would be blessed with research from the money raised that night.

It's a night that is exciting and scary for me all at the same time because I talked about the good parts about being a spokesperson for this event (hanging with Laird and company ;) and the difficult parts about being an adult with CF- wondering what my future will hold, how long I will be healthy, will someone ever want to be in a relationship with a girl with CF??? Etc... It was a deep speech, something I had never done before. Last year's speech was filled with childhood memories, my love for surfing and my history as a woman with CF...and this year, I felt God call me to share more of my heart, and what's been happening this past year. And if you've been around on this blog much you've noticed that this past year has not been easy. I've spent more time in the hospital this year than previous years, and been faced with many decisions that come along with being an adult- how do I support myself financially (for example). Sharing this with 600 people was quite an experience and as soon as I stood up on that stage I KNEW that it was the presence of the holy spirit giving me words and courage to stand up there, it wasn't me. I was calm and ready, and my prayer is that my words ministered to the hearts of people there.

So as I reflect back (im sure more rambling will come), I am filled with gratitude and amazing memories of that night. I loved spending time at such a special night with my family and friends! I feel so much love from the 600 people around me that night and the support raised emotionally and financially has changed me. I feel blessed to be God's instrument and used for His glory, and I feel the joy of representing the CF community and knowing that my story is being used for good. I feel excitement in knowing that someday a cure for CF can be found and that I worked hard to see that happen, and most of all, I am thankful to God that I am alive to be a part of all this, I know it's in His plans for me to be here (gosh, this sounds like an oscar's speech ;).

Check out some pics from the night, and I'll probably be posting more random stories and thoughts as time goes on. This event has played such a huge role in growing me and changing me that I can't help but talk about it :)
~Em

Pipeline to a Cure, Tomorrow!

That's right...the event is finally here!

Pipeline to a Cure, 2009 is tomorrow night at the Hyatt Regency in Huntington Beach, CA. After many months of preparations it is here, I am very much looking forward to this evening where CF awareness will be raised and money will be raised to support research. (Tickets are still available to the event as well as to enter to win a Toyota Prius! See my previous post about that)

Join me tonight and tomorrow in praying for the evening- pray the evening will go smoothly, pray for the people attending, pray that the money raised will go towards great research and a cure for CF, and keep me in prayer as I will be speaking and sharing my life with the 600 people there.

Thanks, friends...can't wait to post some pictures and share some stories of this great night with you :)
~Em

Win a Toyota Prius & Support CF!

As a part of Pipeline to a Cure, this year, we have an amazing drawing to win a 2010 Toyota Prius!! It's brand new, gets 51 MPG and is fully loaded! I'd like to offer this to anyone here reading my blog that's looking to win a new car AND support Cystic Fibrosis in the process!!

Tickets to this drawing are only $100 which is a great deal for a new car :). The drawing is limited to only 600 tickets so everyone has a great shot. plus all this money goes directly to CF research. Check out our website for more information (Click on "Win A Prius" on the sidebar for more info about the drawing):www.pipelinetoacure.com

 If you are interested in buying a ticket for the drawing (you do not need to be present that night to win), please contact the CF Foundation Office in Orange County, CA at 714-938-1393 and just let them know you want to buy a ticket for the drawing. Or you can comment on this post and contact me, I have some forms you can fill out to enter the drawing!! 

Thanks, all for supporting Cystic Fibrosis!!

~Em

Workin' on my speech...

Yep, it's that time again...Pipeline to a Cure, 2009! See previous posts for details about it. I'm just chilling tonight, working on my speech so I thought i'd take a little breather and say hello on my blog :). As I am writing and thinking tonight about the support that is around me as I battle CF, I want to say thank you to everyone that does support me. You all are an incredible gift in my life, thank you- friends, family, and people I don't know for your constant prayers and love that help keep me going through the ups and downs of a life with CF.

Much love to you all! 

Ok...enough distractions, back to my speech! The event is just 3 weeks away!

~Em

Paddling with Dave Kalama

Last Saturday we did a "pre-event" to help generate some excitement and mainly awareness for Pipeline to a Cure coming up in just 4 weeks! So we hit up the back bay of Newport and thanks to the Newport Aquatic Center, we (the CF Foundation) were able to host an invite-only "Paddle with Dave Kalama" day! It was a blast and everyone invited was able to learn about Cystic Fibrosis and learn how to support our event coming up. We generated tons of interest, and about 60 people came to hear about Pipeline and CF, and many committed to be involved :). After sharing our story and our goals, the invitees were able to get primo paddle lessons with none other than legends Dave Kalama, Jeff Clark Mickey Munoz and Jericho Popplar. It was a GREAT day!

Thanks to everyone involved , it was a blast :). here are some pics from the event , props to my buddy Steve for volunteering to take these!
I love doing events like these :)
~Em
Off they go!
Tandem paddling with honoree, Mike Sullivan.
Kim, Dave Kalama and I :)
Rocking the new 10 ft paddle board.
Dave teaching lessons.
Meeting Jason Lezak, Olympic swimmer and hanging with Mickey Munoz!

Pipeline to a Cure 2009!!

That's right...year #2 of Pipeline to a Cure for Cystic Fibrosis is coming! It's only 1 month away, Saturday July 18th- I am stoked!!!

I'll be posting and sharing my perspective as things go along- but as always, I'd appreciate and love some prayer for this event and the people who will be attending. This is an amazing night to share about CF so I pray people will understand the disease and do their part in helping us fund research for a cure :).

Check out our new website!!
www.pipelinetoacure.com

~Em

A Day with Laird!

So, not much exciting has been happening lately...until now!!
I got to spend the day yesterday with Laird Hamilton, big wave, legend surfer. It was SO much fun! We had lunch and then headed out stand-up paddling in Malibu for an hour or so. I got private paddle lessons with Laird and even tried riding a wave in on the board- I was almost successful, haha ;).
It was a blast!!! I am getting excited for Pipeline to a Cure this year, it's going to be an AMAZING event. This was just the start of a fun summer ahead :)
~Em
The Malibu surf...a little cloudy outside but the swell was perfect :)
Pics of Laird and I...hmm..maybe I need a tan?

Fuel TV

A week or so ago I posted about Fuel TV doing an interview of me for Pipeline to a Cure... Well, it aired today and will air again tomorrow on Fuel TV, 11:30 and 2:30 (california time). I'm still working on seeing if I can get an online clip, so far no luck, but if I do I'll post it. If not, and you get fuel tv, check it out tomorrow (tuesday, april 28th)! I, myself, will be watching it when I get out of the hospital- my fabulous parents taped it for me :)

~Em

Interview Update

It went great! I was interviewed for a show called "The Daily Habit" on Fuel TV and it will be aired next week, April 27th!
They asked me questions about CF and Pipeline to a Cure, coming up in just a few months- i'm getting excited! This was an awesome opportunity for Pipeline to get some press leading up to our event, Fuel TV is the channel for the action sports industry so many people who are into surfing will be watching :). Hopefully, they'll want to get involved in the event!

Overall, it was a fun experience- a real tv studio and a chance to share my heart for CF with people- can't wait to see it air. If they have it online next week, hopefully I can post it. If not, i'll post the date and time for anyone that has the channel to check it out!
~Em

Interview Tomorrow

Pipeline to a Cure 2009 is on it's way! And what better reminder than to be headed to an interview in the morning for Fuel TV, and tv channel for surfing, skating and other action sports. They are interviewing me about this year's Pipeline to a Cure and helping us get the word out about CF and this gala fundraiser. :)

I'd appreciate any prayers for me as I face brutal LA traffic in the early AM and also that I can share my life, story, and excitement for Pipeline. I'll let you know how it goes and give info about when it will air. It's a small tv station, so maybe it will be found online? Not sure, but i'll know more tomorrow!
~Em

Goodbye Summer, Hello Fall

In the words of Dashboard Confessional, who sing it so well,
"So long sweet summer- I stumbled upon you and gratefully basked in your rays.
So long sweet summer- I fell into you, Now you're gracefully falling away..."

Today is the official first day of Autumn, so I bid summer of 2008 goodbye with a a few favorite memories from an incredible, life changing summer.


Fabulous family time...
Memories with friends (this pic is just one example of the many memories shared and the blessings I received from so many)...
A TON of beach/surf time on both East and West Coasts...
And sharing my story at the innagural Pipeline to a Cure Gala, thus changing me forever...
It was a sweet, sweet summer indeed...
~Em

1 Month Ago Today...

Pipeline to a Cure was happening! I can't believe it's already been a month since the event...I thought I would post some pictures and also share a little bit deeper about how this event and being involved with the Cystic Fibrosis has been a life-changing event. Even 1 month later, I am still amazed at all that happened and still processing it all, but i'd like to share here a few thoughts...

As I look back on the night of the gala, I am just stunned by the amount of people that were there to hear about CF, the amount of people working hard to put that event on, and then the amount of people who talked with me after I spoke. I talked with many people, and I heard throughout the night of the impact i've made on people, I had no idea and was just stunned by what people said. I've never felt like public speaking was something that I wanted to do...until now, I see that God has placed that ability in me and I see how I can be used for His glory and for good.

For years, I've wondered "What is the purpose in my having CF?" I've read bible passages like Jeremiah 29:11 and Romans 8:28 and i've wondered- how can God use something like CF which is a terrible disease, for something good in His plans, when CF has already altered many of my dreams and plans? Whether you are a Christian or not, most people have wondered "What is my purpose, what am I here for?"

For the first time, at Pipeline, my eyes were opened and I was humbled to see God using CF for good. I felt like my life had a purpose, and I was blown away by that. First, my life and story were used to bring awareness about CF and raise research money. But more than that, my life was used for God's glory as it was obvious to me- I can't do this without God and my prayer was that it would be God who was seen through my heart. Secondly, I felt it to be an incredible honor and responsibility to be an adult with CF, sharing my life and story. I know that the money and awareness raised that night was not just for me- but for the 70,000 other CF patients worldwide. I feel incredibly purposeful knowing that my being alive and 25 can be used to not only bring God the glory, but bring encouragement and hopefully research that many around the globe will benefit from...

Lastly, I realized, if I could work with CF and do my part by using the gifts that God has shown me, to help raise awareness and hopefully bring about a cure through research, then I want to do this the rest of my life or until a cure is found :). I've never thought that working with CF in my life would be something I love- for years i've been shy, I didn't want CF seen in my life and I've been scared to share this disease with others. However, now, I've seen that God can use me, and feel comfortable with my life with CF, I hope to continue doing this. I loved being there, being an 'ambassador' on behalf of the CF Community and I feel a sense of purpose and joy as I'm doing what God has put in me. I have a passion for the CF community, and God has shown me that this is something I am made to do for me and for others with CF...My prayer is that God will continue to use me, and show me how I can use my life with CF for his good. I can't wait for next year, and for all God is developing in me and through me in this campaign to raise money for CF. I am honored to be a part of it :)

Here's to a cure for CF, and for Pipeline to a Cure 2009!!
~Em

Fun pics from the night:

Post Pipeline Press

Since the event, we have continued to see some press come out!
Its been pretty awesome to see it all happen...and see CF really get some awareness :)

Check out this link to see a web-video that the local orange county newspaper (OC Register) made- it has clips from that nights event:
http://link.brightcove.com/services/link/bcpid1485317738/bclid1485323745/bctid1690990226

Next is an article that ran in the OC Register about Pipeline, on July 19th (I couldn't figure out the link, so I copied it below)...
~Em


------------
Cystic fibrosis patients find relief in the sea
Surfing event today in Huntington will put participants in what’s been found to be a natural aid: salt water.

By CHRIS DAINES THE ORANGE COUNTY REGISTER

Through surfing, doctors in Australia have discovered one of the most effective treatments available to cystic-fibrosis patients – salt water.
“It’s not a cure, but it is the most effective therapy that CF sufferers have ever had,” said Paul Motenko from the Cystic Fibrosis Foundation.
Cystic fibrosis, a genetically inherited disease, affects organs in the human body by interrupting the ability to carry salt and water to and from cells. This causes a buildup of mucus, eventually creating scar tissue that damages organs and limits sufferers’ ability to breathe.
Doctors observed that patients with the disease who surfed were healthier than those who did not. Clinical studies, completed with support from the foundation, proved that surfing indeed helped patients. Saltwater treatments are now regularly given to patients around the world.
Surfing legend and Dana Point local Mickey Muñoz found out about the breakthrough and felt inspired to help.
“Surfing is the fountain of youth. I built a lot of boats and boards in my days and inhaled a lot of toxic fumes, so I could empathize on that level,” Muñoz said.
The foundation introduced Muñoz to cystic fibrosis patient Emily Haager, 24, of Diamond Bar. The disease lessens Haager’s ability to breathe, leaving her with only 65 percent of typical lung capacity compared with other adults her age. She has been surfing regularly for about a year and was very excited to get the chance to surf with Muñoz.
“When I’m in the water my lungs clear out, I breathe a lot deeper and I feel great afterwards,” Haager said. “Mickey has years of knowledge and wisdom. I love hearing about his surfing adventures.”
Muñoz and surfers Laird Hamilton, Jericho Poppler and Dave Kalama are all backing the foundation’s inaugural Pipeline to a Cure fundraiser being held today at the Hyatt Regency Huntington Beach.
“This is the first time that participation in a sport has been found to be beneficial to a fatal genetic disease. Once surfers understood the sport they loved – along with its healing and spiritual elements – also helped to relieve CF, they rallied behind us like you wouldn’t believe,” Motenko said.
The foundation’s event is raising money to aid in the funding of research, treatment and an eventual cure.
“This seems like such a natural cause for surfers to get behind,” Muñoz said.

About cystic fibrosis

Every year, 1,000 new cases are diagnosed. In 2006, the median life span for sufferers was 37. It clogs lungs and leads to lung infections. It stops enzymes from helping the body digest correctly. Source: Cystic Fibrosis Foundation

Pipeline to a Cure

What: Inaugural fundraiser sponsored by the Cystic Fibrosis Foundation and PacSun When: 6 p.m. today Where: Hyatt Regency Huntington Beach Events: Silent auction, dinner, dancing, live auction and an acoustic performance by Social Distortion
Tickets and information: pipelinetoacure.com
CONTACT THE WRITER:
9 1 9-492-5 1 35 or cdaines@ocregsiter.com

The Beginning of "Pipeline"

I've been blogging a lot about Pipeline to a Cure, a big fundraising event and campaign to connect the surfing community and Cystic Fibrosis with a goal to raise money and awareness to find a cure for Cystic Fibrosis.

Now that our innaugural event is over, a few weeks ago (July 19th), I thought I'd blog the whole story now that I have some time...A lot of people have asked me, how did I get involved with this campaign? How did it all get started? So...here's the beginning story...

I began surfing after a long bout in the hospital in 2006. I was in the hospital when, my doctors asked me to try a new treatment that had been released called "Hypertonic Saline", a very intense concentrated dose of salt-water, created to mimic the ocean. This was created because they had found surfers with CF, in Australia, were significantly higher in their lung function due to the salt water hydrating the lungs (see this article for more information).

So, I tried the treatment, and began using it because it helped me to cough out mucus easier, and so I then began surfing a few months after my hospital stay...I've been hooked ever since :).

As surfing (and Hypertonic saline) became more of my routine, the CF Foundation office in Southern California and other individuals involved in the surf community and with CF began dreaming up the idea to get the two worlds connected-- after all, surfers spend 90% of their time in the salt water that is hydrating CF lungs! So, Pipeline to a Cure was born and the date was set!
All they needed, was a person to help connect and share a story with the surfing community to help them understand CF...that's where I came in :).

See this Youtube Video to see the beginning of my involvement (thanks to Jordan, and Casey for their amazing work in this video coming together, and helping me to get out of my box to do it!)... As I did this video, it all snowballed from there, and God began to grow me as I became more involved and began to realize God's call for me to share my heart and my story with the surf community and CF community...This is the first step of faith for me, and I then saw God opening doors and challenging me to use my life with CF for Him...

Emily's Story on Youtube

~Em

Glad to be home :)

I finally made it back home, to the earthquake-shaken california :).

After 2 weeks away, and over 24 hours of traveling to get home (American Airlines is not my friend), I finally arrived home this morning and am SO glad to be here!

Being away was awesome- I had some great time to really reflect on life, be with God, and spend some very quality time with my family from all over the US. However, I wasn't feeling too great physically and our bummer-trip home with cancelled flights and staying the night in Dallas, TX was not the best for me. I'm gonna need some good recoup time just from my vacation, haha. I ask for your prayers for my body- I'm tired, and my breathing hasn't been the best the last week or so...thanks.

Anyways, good to be home. I look forward to posting more stories of my vacation, pics, and many more stories and pics from the Pipeline to a Cure event that happened 2 weeks ago. God is really changing me, and I believe, leading me to use my life even more for Him. I look forward to sharing on this blog, all that God is doing and sharing all the fun that's happened in the last few weeks!
More later :)
~Em

What a night...

So many stories to tell, and many pictures to post...
I will give the highlights right now, and post more in depth stories at a later time. Right now, I am still processing emotionally, mentally and spiritually all that happened that night. But basically, it was an incredible night...

Highlights:
-$380,000 was raised towards CF Research!
-We filled all 600 spots, and then some
-The surfing industry understands CF and wants to do MORE to help find a cure!
-My speech went SO well- God truly intervened, took away my nervousness and the words came out exactly as I had prayed. the Holy spirit was with me, and with the people in the room.
-It was a fun night :)
-I was blessed by ALL my friends there to support me and work hard behind the scenes to help this event go on...knowing they were there to support me, I was humbled.
-All surfing companies and media can't wait to be involved for years to come...until a cure is found.
-God is working, I have a feeling that much is in store for me as I keep being involved with this.
-I was sustained physically thorough a long night of pictures, talking with people, and God shone through me.
-I was able to connect with families and CF patients that night, how awesome!
-Oh...and someone donated a Laird Hamilton Paddle board, and lessons with him, to me :). I am stoked!!

More to come...here are a few pics with my friends (aka the awesome volunteers). I'll download some more, these are all I have on my computer right now.
Thank you all for praying for me- it was an amazing night, no words can describe it...
~Em

Excited and Nervous

It's finally here!! The big day!
Tomorrow evening is Pipeline to a Cure benefiting the Cystic Fibrosis Foundation. It's a gala dinner that ties both the surfing community and CF together to raise money for research (see the label "Pipeline to a Cure" for more posts about this...

So, I'm finally feeling ready for this! I will be the main speaker for the evening, I've been the 'face' for this event for the last year- and its really been picking up speed. I'm feeling excited and nervous, all at the same time...

Excited...because this event has been in the works for over a year- many people have worked hard to get this event off the ground, celebrities and major surfing stars are involved and giving up their time, and the night is just going to be a blast! I am excited to be with the people that are supporting CF, I feel so humbled that people are giving thousands of dollars to cure the diesase that I have. I am excited to get dressed up and enjoy a gala dinner with friends and family, and also I am excited to share my story and my heart- this is one of my biggest passions in life, I am STOKED that I get to do this!

Nervous...because I will be sharing my story and my life with over 600 people in the room. I have never spoken to this many people, and it's definitely a little intimidating when I think about it. I ask for your prayers for my nervousness tomorrow night. I ask for your prayers as I really just want to be me- I am praying God will be glorified through my words, my heart and my actions, and I ask for your prayers that things will go smoothly, my speech will be heard and understood well, and that my words will be clear when I talk.

It's going to be a great night- I can't wait to post pictures and tell all about it!!
Here's to research and a cure for CF...
~Em

"Real Orange", on KOCE tonight!

Tonight I am scheduled for an interview on KOCE (Cable PBS channel, look online to see which channel your city has- here in Diamond bar, its Channel 8)...
The show is called "Real Orange" and its all about things going on in the lives of Orange County. They are doing a segment of the show on Pipeline to a Cure, and the Cystic Fibrosis/Surfing connection...Myself, and Paul Motenko (part of the CF Foundation) will be intervied live on the show tonight.

I ask for your prayers- I am a little nervous as it will be live. Each interview i've done thus far i've been able to screw up because they edit things...however, this show will be on live. Pray my words are clear, that I am able to articulate and be myself with the interviewers and the camera, and pray also for my interactions with Paul and the tv station. My heart is that God will be seen through CF, and that Pipeline will be given the press needed. Keep praying for our event, it is coming up in only 6 days!

The show will air at 6:30pm tonight, will be re-played at 11pm tonight and 8am tomorrow morning...
Thank you so much for the prayers and support, I definitely appreciate them :)
~Em

KOCE Airs tonight

My story, and my day of surfing with Mickey Munoz will be airing tonight on KOCE. It should be on at 6:30, and then replayed again at 11pm and 8am tomorrow morning :).

KOCE is channel 8 for me, but I know its different everywhere else. its basically the cable version of PBS, so check the KOCE Website for listings in your local so-cal area. I hope I can figure out how to post it up on my blog, but we'll see how that goes!

Hope the show tells my story well, and I pray that those who see it will be interested in supporting CF and interested in Pipeline to a Cure!
~Em

Interviews and Press...update

See the first post below to read the first one of this series.

Yesterday, we did lots of press and interviews for Pipeline to a Cure! Two tv stations were there- KOCE and KABC, and also a reporter from the OC Register (newspaper). On top of that, I got to surf with Mickey Munoz and Jericho Poppler ...two of the most famous and legendary surfers in the history of surfing!! They are both incredible, lots of fun, and I felt like i gained a TON of surfing wisdom from them :)...Not to mention, they wanted to talk about my life with CF and they are 100% involved in helping out the Cystic Fibrosis Foundation!

All in all, it went well. As of now, I know that ABC and KOCE will air the pieces today or tomorrow, i'll hopefully post it on here when I get the chance...and the OC register should print an article by the end of the week. I'll keep the blog updated :).
Thank you all for praying, this has been a BIG change in my life- i'm vulnerable, and open about my life to people and all along praying God will be seen...
~Em