HAVE A HEART

You are invited to
The Northern Illinois NMF Chapter’s 17th Annual Marfan Syndrome Walk-a-thon.

Join us for our Have a Heart Walk-a-thon, Bike or Rollarblade event.

DAY: Sunday June 6th, 2010
TIME: 11:00am Registration Walk begins at 11:30am till ???
LOCATION: TY WARNER PARK in Westmont IL
(see mapsonus.com for directions)

This is a Memorial Walk in memory of those who have passed. Their names will be posted. If you wish to add a name please call or email us.

Please mark your calendars for this great event!!!

All funds raised will be donated to Pediatric Awareness and Education and Support.

Paramount Tall Club of Chicago will host the outing and Marfan raffle. The picnic will be paid for by the Northern Illinois Chapter.

Please let us know if you are able to attend so we order enough food and drink for everyone. R.S.V.P us at our voice mail number 630-415-0044 or e-mail us at: bklein01@sbcglobal.net

T-shirts for all who participate with a minimum donation of $25.00 or more. There will be door prizes and a raffle after registration.

If you are unable to attend, but would still like to make a donation for this important cause, simply print the form below, fill it in, and mail with your check to:

Bruce Klein
President Northern Illinois Marfan Chapter
1328 Court O
Hanover Park, IL 60133-5511

Pledge Sheet

Name_________________________________

Address_______________________________City,State_____

$Amount_____________

Fed. Tax I.D. 501c #52-1265361

We thank you for your support.

Bruce

Please consider any size contribution. This is truly a good cause. There are no salaried CEOs or staff dipping their fingers into the funds. ALL the money is used for Pediatric Awareness and Education and Support.

I'll be back next week. Until then...

Happy Writing!

Sloane Taylor
Sweet as Honey...Hotter than Hell
www.sloanetaylor.com

DRINK FOR A CURE

Sounds like an odd, but fun way to combat a little known disease that strikes thousands of people worldwide.

September 19, 2009
8:00pm to Midnight
Molly Malone’s Irish Pub
7652 Madison Street
Forest Park, IL

The donation for this event is $50.00 per person and includes all your drinks and food.

Drink for a Cure began in 1998 when Christian Banke was diagnosed with Marfan syndrome. Christian died in 2002 while undergoing surgery. He was the second person stricken in the Banke family. They soon learned most people, including doctors, had not heard of Marfan syndrome. Millions of people across all geographical and racial groups can have Marfan syndrome. To make the world more aware and raise money for this under-funded disease, the Banke and Yario families hold a yearly fundraiser that raises awareness for this silent killer by donate the funds to the National Marfan Foundation.

Here’s a little background on the disease.
Marfan syndrome is a disorder of connective tissue. Connective tissue holds all parts of the body together and helps control how our bodies grow. Because connective tissue is found throughout out bodies, Marfan syndrome can occur in many different parts of us. The features are most often found in the heart, blood vessels, bones, joints, and eyes. The lungs and skin may also be affected. Marfan syndrome does not affect intelligence.

How does someone contract Marfan syndrome, you might ask?
Each child of a Marfan victim has a 50 percent chance to inherit the disorder. Sometimes a spontaneous mutation occurs during the formation of sperm or egg cells, resulting in a baby with Marfan syndrome. Two unaffected parents have only a 1 in 10,000 chance of having a child with Marfan syndrome. Approximately 25% of cases are due to a spontaneous mutation at the time of conception.

Your donations do help.
Pediatric Awareness and Educational Programs are in place to make the medical community, all health professional, the media and the public conscious of this disease for early detection. Your contribution, not matter what size, is greatly appreciated. The National Marfan Foundation is a 501 © (3) charitable organization therefore all donations are tax deductable. Their Tax ID Number is 52-1265361. To learn more, please go to www.marfan.org or call 1-800-862-7326.

I hope you can join us Sept. 19. You’ll have a great time while helping with an excellent cause.

Sloane Taylor
Sweet as Honey…Hotter than Hell
www.sloanetaylor.com

MARFAN, Help is a Phone Call Away

If you suspect a friend or relative has Marfan, please contact a clinic for an assessment. It is possible to google for a facility in your community. Should you live in the Chicagoland Area, below is a list of excellent locations who will help you.

Children’s Memorial Hospital
2300 Children’s Plaza
Chicago, IL 60614-3394
Clinic Coordinator: Bethany Friedman
773-975-8507 Clinic hours: 2nd Friday of the month
____________________
Edward Hospital
801 S. Washington St.
Naperville, IL 60540
Clinic coordinator: Celia Thomas, R.N.
630-527-7180 Clinic hours: 4th Monday of the month
___________________
Loyola University Medical Center
2160 S. First Ave.
Maywood, IL 60153
Clinic coordinator: Sara Cherny
Call for appointment 708-327-9056
___________________
Northwestern University - Feinberg School of Medicine
201 E. Huron St.
Chicago, IL 60611-2968
Clinic coordinator: Amy Ochs, R.N.
Call for appointment 312-695-4965
____________________
University of Chicago Medical Center
5841 S. Maryland Avenue
Chicago, IL 60637
Clinic Coordinator: Lisa Dellefave, MS, CGC
773-702-4310 Clinic hours: 2nd Thursday of the month

Please don't delay. Have your suspicions checked before it's too late. You would be saving a life.

I'll be back tomorrow,

Sloane Taylor

MARFAN, DO YOU HAVE IT?

Today we have a guest blogger, Bruce Klein, President Northern Illinois Marfan Chapter. I hope you all read what Bruce has to say. It is life saving.

This is the year of Abraham Lincoln’s 200th birthday, which brings on my question;

What do Marfan Patients and Abraham Lincoln Have in Common?

Abe Lincoln was thought to have Marfan syndrome. What is this dreaded disease?
Marfan syndrome is a connective tissue disorder discovered by Dr. Antoine Marfan in 1896 in France when he treated several children with this disorder.

This sometimes inherited condition effects approximately 1 in every 5000 people in the U.S. While only sometimes inherited, it’s been proven that 75% of the cases diagnosed are inherited and the other 25% of the cases are a new spontaneous mutation at birth.

Researchers today have learned that this condition is caused by a mutation of certain chromosomes that effect a protein called fibrillin. Fibrillin is the glue that holds our bodies or connective tissue together and is found throughout us from head to toe. Like in most syndromes and diseases there are varying degrees of Marfan syndrome from mild cases to severe and life threatening. Diagnosis of Marfan syndrome is often missed by doctors who do not have experience in treating patients with this disorder. We have 5 established clinics in the Chicagoland area which will be posted in this blog Monday, April 6.

Some symptoms of Marfan syndrome are:

Taller than Average Long Thin Face
Hyper-mobility of All Joints
A Disproportionment of Body, Arm & Leg Length
Long Fingers and Toes
Flat Feet
Eye, Lens Dislocation
Curvature of the Spine
Hernias
Stretch Marks
Chest Deformity (Pectus Excavatum or Carinatum)
Spontaneous Pneumothorax
Heart Murmur & Aortic Artery Dilation (Aneurysms) which can be fatal

If you know someone with 3 or more of these symptoms please tell them about Marfan syndrome and help us save a life.

For more information go to the website for the National Marfan Foundation, www.marfan.org. You can also email or call us at our chapter voice mail number listed above in our letterhead.

How do I know so much about Marfan syndrome? I have it and I am.

Bruce C. Klein, President
Northern Illinois Marfan Chapter
The Northern Illinois NMF Chapter
1328 Court “O”
Hanover Park, IL 60133
630-415-0044 or 1-800-8-MARFAN
email: bklein01@sbcglobal.net

Thank you all for your time. Please return on Monday when Bruce will have more on this life threatening disorder.

Sloane Taylor
www.sloanetaylor.com