A Big Thank You!

We had a great time at Holiday From the Heart at Mercedes-Benz of South Charlotte! Approximately 50 people attended, & we were able to get our name out to that many more people in the Charlotte area!

The silent auction table was amazing - so many great businesses & individuals donated to the auction this year, & we are so thankful to them for their participation! Check out our website for more information about the sponsors of this year's event!

We thought you would enjoy seeing a few pictures from the event. If you were not able to attend, you really missed out on a wonderful night of food, fun & spreading the word about The Luke Pier Foundation, aortic aneurysms & connective tissue disorders. Click here to view the full album.

Live cooking demonstration by Blue Restaurant.
The Kimberly Carper Band donated their time to the event & did a wonderful job singing some amazing blues & jazz!
A large view of the dealership, including the great silent auction table right in the center.

Thank you again to all who came & donated their time & money to our great cause. In all we raised approximately $1900 from the silent auction, & Mercedes-Benz of South Charlotte gave us a generous (& unexpected!) donation of $2500. THANK YOU TO EVERYONE!

Holiday From the Heart

*Click on the image to view the high-resolution invitation.

We are still in need of silent auction items for this fundraiser!

Please consider donating* a gift basket from your favorite store or gift card from your favorite restaurant to The Luke Pier Foundation to help make our silent auction a success. We are also accepting cash donations that we will use to purchase items for the silent auction! Please contact us today if you are able to donate* something to this exciting event! *Donations are tax deductible as permitted by law.

Save the Date

To contact us about this event, please send us an email!
*Click on the image to view it in a larger format.

Our Next Event!

Well, fall is officially here, & we here at The Luke Pier Foundation are busy planning our next event. It's hard to believe that this will be our 4th event already!

We have a meeting with the event hosts on Friday, & we hope to be able to give you more details after that planning session. In the meantime, please pray that the event is a success & that we can all pull together to finalize the details!

We have a lot of work ahead of us, & if you are able to volunteer your time & energy to helping us make this event successful, please let us know!

Stay tuned for more details about this exciting event!!!

How Prepared Are You?

We here at The Luke Pier Foundation subscribe to the updates sent by The National Marfan Foundation. Often, the updates are regarding specific drug therapies or research pertaining to the Marfan Syndrome which Luke has not been diagnosed with. This update in particular is important for any of our readers, though.

Connective tissue disorders and the potential aortic aneurysms present themselves in ways other than just the Marfan Syndrome. The following information is very important for those who specifically want to learn more about aortic dissections or have family members who have this condition. The information is important for health care providers, patients and family members alike.

Click on the following links to learn more (information provided by NMF):

1. Emergency Situations Main Page - this page contains a wonderful amount of information, summarized in an easily understandable format
2. Emergency Information Packet - this packet will help guide you through all the steps of emergency preparedness in the event of an aortic dissection. It even includes a printable aortic aneurysm medical alert card that you can give to the emergency room attendant or EMS!
3. Hospital Interview Information - this contains questions to ask your local hospital to ensure that they are equipped to help in the event of an aortic emergency
4. Emergency Diagnosis & Treatment of Aortic Dissection - this is an online booklet that has very helpful Q&A's about how aortic aneurysms and dissections are diagnosed

Considering a donation to The Luke Pier Foundation? Click here to learn more.

Luke's Visit

Luke had his appointment this morning, & the doctor gave us encouraging news.

The aneurysm has changed, but it is not changing rapidly. We had hoped for a miracle, of course, but this is still good news!

They will see Luke again in one year, so he will not have another trip up to Johns Hopkins until 2009. In the meantime, they have instructed him to keep "doing what he's doing" (no weightlifting, heavy lifting or strenuous activity) & they will examine him again in a year.

>>>We want to take this opportunity to remind you of how important the medical research is to help patients like Luke. Our mission is an important one, & we need your help before we can help others. Please consider donating today!

Follow-Up Appointment

Luke and his mom, Vikki, are on their way to Johns Hopkins now for a follow-up appointment, thanks to Children's Flight of Hope.

This appointment will help the doctors determine whether or not his aneurysm is growing, changing or staying the same.

Check back tomorrow for an update on the results of this follow-up appointment!

Thank you!

Very Interesting Article

This is an interesting article we came across about the drug treatment developments for the Marfan syndrome & other connective tissue disorders. Dr. Hal Dietz, referenced in the article, is Luke's doctor at Johns Hopkins. There is also an audio interview in the original article - be sure to check it out because it's very informative!

Old Drug Offers New Hope for Marfan Syndrome
by David Kestenbaum

Morning Edition, May 8, 2008 · We tend to think we know what most pills in our medicine cabinet do. But sometimes a drug approved to fix one thing also turns out to fix something completely unexpected.
That may be the case with a common blood pressure-lowering drug called Losartan. It's been on the market for more than a decade and has been taken by millions of people.
Now it looks as though the drug also could be a powerful tool for a deadly genetic disorder called Marfan syndrome. About one or two of every 5,000 Americans are thought to suffer from the illness, according to the National Marfan Foundation.
Although caused by a defect in a single gene, the disorder wreaks all kinds of havoc. It alters the connective tissue between cells and can affect the skeleton, the eyes, the lungs. Most dangerously, the aorta — the main artery coming out of the heart — can weaken, enlarge and burst. People with Marfan syndrome are generally tall, thin and loose jointed, which has led some to speculate that Abraham Lincoln had the disorder.

Click Source to read full article:
http://www.npr.org/templates/story/story.php?storyId=90257827&ft=1&f=100

What a day we had!

We had a successful tournament on Saturday, May 3, 2008. It's hard to believe it's over, after so many weeks & months of planning. We estimate that 275 people came out to watch & play in our 1-day tournament, which is definitely more than last year!

We had 14 teams play this year (10 men's & 4 co-ed's), & it was a day filled with some really great softball. There were some glitches because two of the teams didn't show up, but we learned a lot about what to do next time & will be ready for it if it happens again. We want to say a special thank-you to all of the men's teams that were so patient & flexible with us as we configured the new brackets!

In all, we raised approximately $6,300.00 - not bad for our 2nd tournament! We feel like each one will be better, & we can't wait for the next one. We do welcome your suggestions, so please send any suggestions to info@thelukepierfoundation.org!

Below are some great pictures from the day. We hope you enjoy them, & we look forward to seeing you at the next Luke Pier Foundation event! (If you are reading this via an email subscription or blog reader, you may need to visit the blog home page to view the slideshow.)

444Don't forget...you can subscribe to our blog so you don't miss out on any of the exciting news about The Luke Pier Foundation. Simply enter your email address in the box at the right of this post. Once you confirm your email subscription, you will receive notices whenever the blog is updated. It's a great way to stay informed!

Thank you, Volunteers!

We want to send out a special THANK-YOU to all of the volunteers who came to help us at the softball tournament this weekend! We could not have done it without you!

And the Winners Are...

Players started filing in around 8am on Saturday morning. The first games started at 9am, & the last game ended at 8pm. It was definitely a day full of some really great softball for the 2nd Annual Luke Pier Foundation tournament. We will post a slideshow of pictures soon, but we wanted to acknowledge the winning teams first!

The 2nd place winners are:

Total Combustion from Piedmont Natural Gas in Charlotte, NC won 2nd place in the Co-Ed's tournament. It was their first time playing together but you wouldn't have known it!JDC Builders came in 2nd Place in the Men's tournament. They played some really great games & were able to beat out 8 other teams for the 2nd place spot!

The 1st place winners are:

Double Play came in 1st in the Co-Ed's tournament. Here they are with Luke after he presented them with their trophy. They said they're ready to play again in the next tournament, so all you Co-Ed teams out there...watch out!

Broome Sign Company won 1st place in the men's tournament. Some of the players on this team were also on the winning team at our October tournament. They are proving themselves to be the team to beat! Their attitudes were apparent when they prayed for Luke, & then turned around & gave Luke the 1st place trophy because of the hard work he is doing to make The Luke Pier Foundation a success.

We want to say a special thank-you to all the teams who came to play on Saturday! Stay tuned for the slideshow...

Brackets are Here!

We have the brackets for the Men's & Co-ed's game available now! We are so excited because we officially have 12 men's teams & 4 co-ed's teams. To put this into perspective, we had 11 teams total last year!

• Click here for the Men's Bracket
• Click here for the Co-Ed's Bracket

Here is some basic info about the tournament:

• First Men's game starts at 9am
• First Co-Ed's game starts at 10:30am
• $5 minimum donation at the gate (Players, Under 18 & Volunteers free)
• Bojangles & Owen's Bagel & Deli are catering (all proceeds will benefit TLPF!), so please bring cash to purchase any food & drinks throughout the day
• Tournament is at Renaissance Park Athletic Complex at 1200 W Tyvola Road, Charlotte NC

Thanks again to all of you for helping us get closer to our fundraising goal of $50,000 in 2008! We'll see you Saturday!

Coming Soon!

We are only days away from our softball tournament, & we wanted to let all of you softball players know that the brackets will be announced SOON! (as early as today)

Please check back here or on our website often to see if the brackets have been posted. We will also contact all of our teams via email.

We are so excited about the tournament this year - it's already bigger & better than our first one - & that is thanks to all of our supporters' hard work!

THANK YOU!

It's Not Too Late!

We are still accepting teams for the May 3, 2008 softball tournament!

Please send us an email to sign up today! Registrations will be accepted thru April 29, 2008.

Don't miss out on this great event! We are still in need of both men's & co-ed's teams. You can check out our website for more details.

We hope to see you there!

Luke, The Radio Star!

The interview with Allen went really well yesterday! Luke did a great job talking to Allen about what life has been like for him since his aneurysm was first diagnosed. Luke also talked about the lifestyle changes he has had to make and what he misses most. Allen also focused on all the May 3rd tournament details to help us reach more people!

Tune in to 95.1 or 104.7 on April 20th & 27th from 6am-7am to hear the interview! You don't want to miss it!

Luke, we're proud of you! Allen, THANK YOU!

Hitting the airwaves!

We are so excited to announce that WBT, our Official Media Sponsor of the May 3rd softball tournament fundraiser, is now airing 30 second promos about the tournament on their radio station! They are helping us reach so many people with the information about our fundraiser!

We also have some other exciting radio news! A local Charlotte radio DJ, Allen, from Kiss 95.1 is conducting an interview with Luke & the Foundation today! The interview will air on April 20th & 27th from 6am-7am. Kiss 95.1 will air it on one of those dates, & 104.7 will air it on the other Sunday.

It's early for many of you in the Charlotte area, but maybe while you're sipping your coffee you'll remember to tune your radio to 95.1 or 104.7 & listen in!

The interview itself will be approximately 30 minutes long & will give us a chance to discuss the tournament, Luke & the Foundation in length. You don't want to miss it! Allen interviewed us last year & really helped us educate people on why we do what we do! Thanks again, Allen!

Matters of the Heart

We recently found this video that was done by the Methodist Hospital & the Kahle family after Tyler Kahle died from an undiagnosed thoracic aortic dissection at the young age of 19.

Luke Pier was fortunate because of his family's persistance that the doctors run more tests than just a basic electrocardiogram (EKG) & blood pressure test - that all came back normal. The insistence that more tests be run is what found Luke's aortic aneurysm, so this story really hit home for us.

• CLICK HERE to view the video about Tyler Kahle's story. It is approximately 20 minutes long, but it will really shed some light on aortic dissection and the importance of being diagnosed as early as possible.


• You can also CLICK HERE to read more about this story & the genetic studies Tyler's death prompted.


• In addition to the video & the Methodist Hospital website, here is a compilation of Pulitzer Prize-winning articles by two Wall Street Journal writers titled "Deadly Discrepancy: New Light on Aortic Aneurysms".

We encourage you to educate yourself on the signs & symptoms or aortic dissection!

Calling all bloggers!

If you have a blog & want to help The Luke Pier Foundation, here's your chance! We have created a widget that you can add to your blog or website to help advertise TLPF! The widget will show your readers snippets of our blog posts & potentially advertise us to many more people!

You can customize the colors to match your current blog layout, so it won't stick out like a sore thumb (would that really be that bad, though?). You can also use this widget to post to social networking sites such as Facebook & Myspace.

Just click the button below to get a Luke Pier Foundation Blog widget of your very own!



As always, thank you for your support!

What We're All About

Hello, Friends!

We thought it would be a good idea to share with you what we are all about.

As you've probably read on our website, Luke's story is an important story to tell. It has been about a year since Luke was first diagnosed with a bulging dilated aortic root (aneurysm at his aorta), & he is still being monitored to find out the cause of the aneurysm.

Luke is currently being treated by the Johns Hopkins Comprehensive Marfan Center in Baltimore, MD. They have a great website with resources about Luke's condition and connective tissue disorders such as the Marfan Syndrome.

Feel free to check out the links below to learn more about why it is so important to us at The Luke Pier Foundation to raise money for research to help prolong Luke's life and the lives of others affected by connective tissue disorders!

• History
• Publications
• Education
• Resources

If you want to do more to help us with our mission, please view our website for ways you can help!

Have you signed up yet?

It's time for our 2nd softball tournament, & we are so excited about the prospect of this year being bigger & better than last year! But we cannot do it without your help!

We have received word about a few teams that are being formed, but we need more than a few! If you haven't signed your team up already, please send us an email to sign up! The tournament is such a fun way to raise awareness about The Luke Pier Foundation!

We are also looking for sponsors. Sponsorships will be our best chance of reaching our goal to raise $50,000.00 in 2008! We are offering sponsorships at the $1000 & $500 levels. Please send us an email if your business would like to sponsor the tournament or if you know of any companies that would be good sponsorship candidates!

Thanks again for your support, & let us know if you need more info about signing up a team, sponsoring the tournament or anything else!

Jumping on the technology bandwagon!

To all of our supporters & friends,

We decided that one of the best ways for you to stay in touch with us and read the latest news about The Luke Pier Foundation was for us to jump on the technology bandwagon & create a blog that you can subscribe to.

On the right-hand side of this blog, you will see a box that you can enter your email address into. Once entered, a pop-up box will appear that will ask you to enter you will receive an email notifying you of the subscription. Please be sure to confirm that email if you want to receive notifications whenever the blog is updated. This is a great way to stay in touch with us without having to remember to check the blog or website on your own!

We will be posting any updates about Luke or the Foundation on the blog, and we will let you know whenever the website has been updated with exciting, new information! You can also feel free to leave your comments below each post! Just click on "Leave us a comment"!

Thanks to all of your for your support & dedication to our great cause! We look forward to an exciting 2008 for The Luke Pier Foundation!