SmileLines

Registration for the 3rd annual “Tee Off For The Twins” Golf Tournament and Clam Bake is now open and can be accessed at the Two Smiles main page.  Whether your a golfer looking to cash in on some great prizes or a supporter who enjoys a great clambake for a good cause, just click on the banner and you will be redirected to the registration page.  This year’s 4 person scramble will take place once again at the Foxfire Golf Club in Balwinsville on June 26th.

This tournament serves as the corner stone of our efforts in raising funds every year to battle DMD and offers supporters an opportunity to come out and enjoy the festivities whether they enjoy the game of golf or not.  Headed up once again by the incomparable talents of Reagan and Steve Goodnough and Nina and Ron Bellomio, this event offers efficient coordination and a fit and finish which many opinions claim as second to none in Syracuse area tournaments.  Sign up today.

Nolan, Jack, and Alison headed to Ohio last Monday for the annual visit with Dr. Wong and the incredible staff at  Cincinnati Children’s Hospital.  The data points remain good compared with last year as the boys continue down the long progressive slope that is Duchenne.  Although I wish the results had remained unchanged, the reality of the disease and it’s grip on my boys remains a daunting component of our family.  Thank you Nolan an Jack for putting up with the countless hours of testing, poking and prodding, you guys are awesome!  We will be stepping up the nightly regime of PT to encompass an 20 – 30 minute routine of stretches in hopes of slowing the affects of muscle loss with both boys.  We will also be increasing the steroid dosage, up by 5 mgs a day, and adding Lisinopril in hopes of maintaining cardio function in the long term.  Our aim is to continue the ambulation for as long as we can as hopes of an alternative shimmer on the horizon.  I will keep fighting as long as Nolan, Jack, and Caleb will do the same and I thank God for the resounding strength of those three children and the enduring resolve that comes from being their father.

Continued smiles,

Matt

With the help of Pat Furlong and her incredible crew at Parent Project Muscular Dystrophy, we are once again headed to the Capitol to stress to all the importance of funding and education about Duchenne.  Due to previous efforts, the vital MD Care Act was reinstated last year, which ear marks millions of dollars for research needed to change this disease.  Good Luck Team!

Continued smiles,

Matt

Alison, Nolan, and Jack got some face time with Repesentative Daniel Maffei to discuss issues facing Duchenne boys and their day to day struggles.  The discussion included school and accessabilty issues as well as their upcoming trip to D.C. in February with PPMD.  The cordial and concerned Maffei was very appreciative of  our efforts and stressed his hopes for continued support  through his office.

We’ll see you in February, Representative Maffei.

Continued smiles,

Matt

On Saturday December 12th from 1 until 4 PM there will be an art auction at the Cazenovia College Art Gallery located at 22 Sullivan Street in Caz.  Organizers Caroline Locatelli, a senior studio art major from Gloversville, N.Y., and Brittany Moore, a studio art  major specializing  in photography, from Alton Bay, N.H.  are students in the College’s Arts in the Community class, and are undertaking the auction as a class project.   ”We wanted to do something for a local organization that would both benefit people and bring the community and the College together.”   Mandy and Brittany, we applaud your efforts and thank you joining the fight.

There will be pieces from various local and regional artists up for auction on Saturday with something for everyone to bid on.  Please stop out and help the cause!

Continued smiles,

Matt

It was announced this week that human clinical trials of the exon skipping drug PRO051 will begin early next Spring in a collaborative effort between Prosensa and GlaxoSmithKline.  The trials will take place in Columbus, Ohio starting in March, 2010 and will involve direct injection therapy as well as intravenous therapy in a double blind placebo format to further the efficacy and dosing parameters for the compound as well as broaden research data on recipients of the drug.  Contact with a researcher involved in establishing the trial has been made and it is our every intention to involve Nolan and Jack in the trial if at all possible.  This therapy has long been thought to be extremely viable and has proven reliable in both computer, animal, and preliminary human trials.  Please follow the link below to the press release which highlights this development and keep hoping for this miracle to come true!

http://prosensa.eu/news/Press%20Release%20GSK%20-%20Prosensa.pdf

Continued smiles,

Matt

It is safe to say that Saturday, September 19th, 2009 was the biggest day in Duchenne Muscular Dystrophy fundraising to ever take place in Central New York.  On the heels of the extraordinarily successful 1st annual Caz Hillbender cycling race, Two Smiles One Hope Foundation hosted the Ski Caz Jam III and spread the word of the Duchenne fight to over 800  music lovers.  Taking place at the Cazenovia Ski Club and drawing in concert goers from all over the Northeast, the concert featured the musical talents of Mecca Bodega, Jim Gavvitt, Gadabout, Family Farm, Dark Hollow, and headliner Ryan Montbleau and his band.  With help from Jason Hees of the Darius Goes West crew and dozens of dauntless volunteers, the 8 hour show went off without a hitch and provided a fun filled day for many families and friends to enjoy.  Hand crafted brew was provided by the Empire Brewing Company and food was catered  by the Golden Pheasant Steakhouse.  A half time show during the event highlighted the various efforts taking place throughout the country such as “Coach to Cure” on behalf of Parent Project MD and “Darius Goes West” on behalf of Charley’s Fund.  In all, the effort raised over $11,000 for research and broadcast the effort to hundreds of new people who will carry the message and spread the word of this relentless pursuit.  We hope to continue this success in 2010 with the Ski Caz Jam IV and want to thank everyone involved for their help.  Please visit the website at www.skicazjam.com for updates and information about next year’s show.

Continued smiles,

Matt

On Saturday morning September 10th over 75 riders from all of the Northeast assembled to take part in the inaugural running of our latest fund raiser, the “Cazenovia Hillbender.”  It was a huge success generating much buz amonglocal and regional riders and raising over $3000 in research funding.  Both 25 and 50 mile races took place on some of the hilliest terrain Upstate New york has to offer and offered participants a free pass to the Ski Caz Jam III which took place that evening.  A special thanks to the race coordinators, Jack Stevens and Rick Cote for their tremendous efforts and their enthusiasm for continuing the event next fall.  Stay tuned for developments at www.cazhillbender.com

Continued smiles,

Matt

How do you test the resolve of the hundreds of friends and family that support your cause? Easy… throw a golf tournament on the rainiest day of the season and have them stand out in the weather for 5 1/2 hours!

I will never be able to thank the nearly 200 folks that came out in the pouring rain to support the “2nd Annual Tee Off For The Twins” Golf Tournament and Clambake held this past Saturday at the Foxfire Golf Club in Baldwinsville. Your resilience and commitment to this fight is unwavering and on behalf of Alison and the boys, I thank you.

As a result of your efforts we raised over $18,000 for treatment research while avoiding any possibility of sunburn on a day that will live as the benchmark for the true grit of Two Smile’s supporters.

Thank you to all of our wonderful sponsors for your support in a year that has been riddled with recession and cutbacks. Thanks to all the volunteers that made it all work so well. And most importantly, thank you to the event committee for your ability to create such a successful tournament while struggling with all the unforeseen obstacles. You are truly the “masters” of the game.

I look forward to next year’s tournament and hope you will all join us again to end Duchenne.

Tee Off 2009 Pics

Thank you and continued smiles,
Matt

Family Life Network contacted the foundation and inquired about doing a possible interview. FLN is a Christian based radio network with over 66 stations throughout the North East. The finished interview aired on Friday, June 5th at 12:20 PM and helped to generate some serious web traffic to our site. Thank you so much for the help, FLN.

Click here to listen to the interview!

Continued smiles,
Matt