SmileLines

What an amazing success. Saturday, June 28th we hosted the innaugural “Teeing Off For The Twins” Golf Tournament. Aspirations where high going into the event with the field of 140 golfers being completely sold out three weeks prior to the event, however, the end result blew away anyone’s expectations. The tournament went off without a hitch thanks to impeccable planning on behalf of Reagan Goodnough and EventSmith of Atlanta. Golfers, friends and families from all over he Northeast and Midwest decended on Baldwinsville to join in on the festivities making it one of the premiere charity golf events of the year. Co-creators and best friends, Stephen Goodnough and Ron Bellomio acted as Masters of Ceremonies awarding the 1st, 2nd, 3rd, and last place finishes as well as longest drive, closest to the pin, and skins awards. Local music act “Mike and Stan” brought their diverse set of blues and classic rock tunes to keep the party moving well into the evening. After a moving speech by Two Smiles President, Alison Willis, the evening was capped off with the awarding of our grand prize, a 50” plasma television. The end result of the event was a staggering sum of monies raised in order to fund translational research for a treatment or cure of DMD.

As a result of this event we’ve raised over $20,000.00 for the cause and informed hundreds of people about our mission in hopes that they may continue to spread the word. We will change this disease.

Thank you so much to our beloved friends and family for taking the time and making this day so spectacular. With you at our side there is nothing we won’t accomplish.

Tee Off Pics

Continued Smiles,
Matt

On Saturday, June 7th, the Syracuse Ultimate Frisbee League hosted it’s annual Cazenovia Ultimatefrisbee Tournament. The C.U.T. brought in teams from all over the Northeast and Canada and was a great venue for spreading the word about our fight. The events organizer, Darren Kupinsky, approached me with an idea for raising funds via a high speed frisbee toss. The event raised money for the foundation and got our information into the hands of young people from all over the region. A great result with little effort, thank you Syracuse Ultimate. We look forward to beating this years 76 MPH throw next year!

Continued smiles,
Matt

As of Monday, June 9th, our inaugural “Tee Off For The Twins” Golf tournament and clambake is completly SOLD OUT.

On Saturday, June 28th, 140 golfers will take to the greens at Foxfire Golf Club in Baldwinsville, New York. Prizes include a hole in one opportunity for a brand new 2008 Saab 9-3 Convertible. The golfers will be joined in the afternoon by added patrons of our 1st annual clambake where they’ll all have a chance to win a 50″ plasma television as well as various other prizes. Music will be provided by local talent “Mike and Stan” and the party will continue until 9PM.

A special thanks to all who are involved in this tremendous first effort. We have set the bar for local charity golf tournaments in Central New York. Here’s to a successful first year.

Continued smiles,
Matt

The Willis family packed up and headed West on Saturday, May 17th for our semi-annual check up of the twins at Cincinnati Childrens Hospital. All the news was very positive. Both boys have remained on the growth chart which is good news considering their daily regime includes a fairly powerful steroid. Respiratory and cardiac function remains normal and their dexterity and muscle mass is very good. A Dexa scan has revealed some bone loss which we may have to address with yet another medication. Alison is currently researching our options to see what the appropriate action is. All three of the boys were troopers, remaining civil through almost 6 hours of MRI’s and countless tests, not to mention the ten hour ride to and froe. The monotony was broken up by a family trip to “All American Stadium” to witness the Cincinnati Reds take on and beat the Cleveland Indians. It was the boy’s 1st Major League Baseball game and they got to watch 2 double plays and a home run which was capped off with fireworks. Jack almost fell out of Mom’s lap as a result of all the excitement.

Our next trip won’t be until Spring of ‘09 as a result of all the positive finding of this trip. Thank you all for your continued thoughts and prayers.

Continued Smiles,
Matt

This past weekend, Alison’s cousin Julia Embury held the inaugural “Mr. Livonia Pageant” at her school to benefit Two Smiles One Hope. All tolled, she helped raise close to $1000 and had a great time doing it. Julia hopes to continue the pageant in years to come and we look forward to supporting her in what ever capacity needed. Check out her work at the link below. Great job Julia!

1st Annual Mr. Livonia

Continued Smiles
Matt

After months of effort put forth by many gifted people, I’m happy to inform you all that our formal launch letters we’re mailed out yesterday morning. We will be following this up with the much anticipated “Tee Off For The Twins” golf tournament sign up forms. More information on the tournament is coming and sign up forms will be available through this site. Registration forms that you can print, fill out, and mail with your payment will be available the week of 3/31/08. The tournament committee is looking for sponsors and prizes to ensure a successful inaugural tournament. If your able to help with either, please contact Steve at stephen_goodnough@ yahoo.com or myself at matt@twosmilesonehope.com. Thank you to all who have contributed to the development of the foundation. Together we will win this fight.

Continued Smiles
Matt

This week the New York Times published an article bringing to light the constant struggles facing all Duchenne patients and their families. The article brings much needed national attention to the disease. I’ve posted the link below, please take some time and read it.

Matt

Lacking Cure, a New Tack on a Muscle Disease (New York Times)

3boyssmile

Originally uploaded by twosmilesonehope

Our new web site is live (yahoo!). We had most fun pulling together pictures of the boys for use on the site.

Want to see more? Visit our Flickr site to see others that didn’t “make the cut” (but are still very cute!).

Through our smilelines, our Foundation blog, we will keep you up-to-date with Foundation news, event announcements, and research updates.