4th Annual SMA Charity Golf Outing held on May 17, 2014

Like many other people, we had not heard of Spinal Muscular Atrophy (SMA) until our grandson, Ryan, was diagnosed at the age of 26 months. Our family was devastated because SMA is a genetic neuromuscular disease with no treatment or cure.

Together with the help of family and many friends, as well as the Lemont, IL community, we are committed to fighting this disease, in honor of Ryan. We believe that no family should have to go through the painful diagnosis of SMA.

In 2011, we organized our first outing; now it’s time for Round 4 at Gleneagles C. C. in Lemont. Again this year, the outing will benefit Families of SMA, the leading non-profit organization dedicated to advancing the necessary research to fight this disease. Researchers now know exactly what
causes SMA. Through generous nationwide support, including many Leo alums, research and clinical trials are directly targeting the cause. Two local research grants were awarded in 2012 to Lurie Children’s Hosp. at Northwestern University.

We sincerely hope you can attend on Saturday, May 17, 2014 or are able to contribute to our event in some way. For SMA info: www.curesma.org More event info, including registering on line:  www.fsma.org/RyanGolf2014 (Use www.)

Sincerely, Ken (Leo ’63) and Jeanne Emerson, Lemont, Illinois

Information below is from the Families of SMA website, please click the link to go directly to the site.

4th Annual Tee Off with the Drive to Cure SMA in Honor of Ryan
Sat 05/17/2014 10:30 AM – 7:00 PM

Gleneagles Country Club

Saturday, May 17, 2014
Help us develop a treatment and cure for Spinal Muscular Atrophy

Last year was a HUGE success, join us again this year for an even bigger and better tournament, in honor of Ryan!

To register for the event, please click the “Register” button to the right. (on the Families of SMA website)
To make an online donation, please click the “Donate” button to the right. (on the Families of SMA website)

18 Hole – 4 Person Scramble with a Shotgun Start
Team Registration: $500
Individual Registration: $125
Dinner-Only Tickets: $50

Check-in and Day-of Registration: 10:30 am
Shotgun Start: 11:30 am
Dinner Begins: 5:00 pm

All golfer registrations include:
18 Holes of Golf, Cart, Dawg at the Turn, Dinner Ticket, Hole Events, Raffle, 50/50 Prize and a lot of FUN!

Please register today so that the much needed dollars can be used at this time for continuing research to discover a treatment and a cure.

Families of SMA is the world’s leader focused on funding SMA research to develop a treatment and cure for the disease. The successful results and progress that the organization has delivered, from basic research to drug discovery to clinical trials, provide real hope for families and patients impacted by the disease. The charity has invested over $55 million in research and has been involved in funding almost two thirds of all the ongoing novel drug programs for SMA.

Families of SMA is a nonprofit 501(c)3 organization, with 31 Chapters and over 110,000 members and supporters throughout the United States. The organization’s work has produced major discoveries, including identification of the underlying cause and a back-up gene for the disease, which provides a clearly defined target for disease altering therapies. The organization is also dedicated to supporting SMA families through networking, information and services and to improving care for all SMA patients.

Click here to learn more about Families of SMA and our programs.

If you have any questions please contact Ken Emerson at (630) 410-8415 or jeanneeme@msn.com.Special thanks to the Leo High School Alumni Association in Chicago and the University of Illinois Alumni Association for their support.

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