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...