SmileLines

Adaptive Waterskiing anyone?

mwillis4 — Tue, 01 Feb 2011 19:00:20 +0000

Although it’s very preliminary at this point, we are trying to bring some of that Northeast Passage, Get It Done spirit to CNY. We were so impressed with the efforts taking place at UNH with Tom Carr and his group of die hard adaptive crusaders, we wanted to try to get a program launched here in Syracuse. There will be more to come so stay tuned and get ready for the water!

Continued smiles,

Matt

Du Tri The Hills Challange

mwillis4 — Thu, 20 Jan 2011 18:47:01 +0000

For the first time in Central New York history, we will be assembling an endurance challenge which will include three separate events spanning the entire 2011 race season. Two Smiles is very proud to announce the “Du Tri The Hills Challenge.” This event will take place at multiple locations starting with the “Du the Lakes Duathlon” at Green Lakes State Park on May 7th. Also on tap is the Cazenovia Triathlon (both Sprint and Olympic distances) taking place August 14th followed up by the 2011 Cazenovia Hillbender Fall Classic on October 1st. All events will benefit Two Smiles and with registrations already coming in the buzz is certain to grow. By registering for all three events you are eligible for the series grand prize as well as saving a sum of money on registrations. For more information please visit the registration page at:

http://www.cazhillbender.com/2011_du_tri_the_hills_challenge

Continued smiles,

Matt

Tips for 2

mwillis4 — Fri, 03 Dec 2010 18:12:22 +0000

The Rochester crew was at it again! Patrick and the family put together an awesome event at the Irish Rover in Webster, NY to raise money for Two Smiles. The boys interviewed Patrick about the event for JN Live. It can be viewed on the Two Smiles main page or by clicking the link below. All in all, a great day filled with incredible prizes and fun for everyone bringing us another grand ($) closer to a cure. Great job and thank you very much for the effort.

http://www.twosmilesonehope.com

Continued smiles,

Matt

Off to Cinci

mwillis4 — Mon, 29 Nov 2010 15:42:07 +0000

Alison and the twins headed to Cincinnati this morning for a visit with Dr. Wong and the crew at Cincinnati Children’s. There has been a growing concern over the boy’s dexterity values in recent months. Their school’s physical therapy team, headed up by Janine Quirk, has noticed a decline with relation to their ankles and comparative analysis with the folks in the PT department at Cincinnati Children’s has confirmed the concern. Nolan and Jack will partake in an abridged visit focusing on options to this current development. Apprehension regarding the possibility of “serial casting” for both boys in order to combat their shortening ankle chords is very real. Serial casting is a treatment used to postpone the eventual ankle chord surgery which occurs with most Duchenne boys so that ambulation can be maintained for as long as possible. The process flexes the ankle in order to stretch the ankle chords to a maximum extended length while casting the joint to maintain the stretch. After 7-10 days the cast is removed and the process is restarted. Depending on the severity of the condition, these steps are repeated until an acceptable value is achieved. The thought of this whole process scares the hell out of me and I can only thank the enduring strength both Nolan and Jack have to get us through this chapter.

Your thoughts and prayers will help as well so please don’t be shy.

To Nolan, Jack, and Mom,

Have a safe and quick trip, I miss you already.

Love always,

Dad

JN Live Episode 2

mwillis4 — Wed, 17 Nov 2010 21:19:37 +0000

The boys have done it again. With a little help from Dad, they have developed, produced and starred in another episode of JN Live, the show that keeps Two Smiles supporters in touch with whats going on and how they are doing. They hope to update episodes monthly and each show can be viewed on the Two Smiles main page or at Youtube. They check their view stats daily so tune in often and enjoy the show!

Continued smiles,

Matt

Florida Here We Come!

mwillis4 — Fri, 05 Nov 2010 21:12:01 +0000

Shortly after this year’s Irish Open, we were contacted by two of the Rochester Dwyer family friends, Yvonne and Mike, with an offer for some R&R, on them, at their home in Sarasota, Florida. The one thing that continually amazes me along this journey is the awe inspiring generosity and incredible kindness expressed by everyday people who choose to get involved with this fight. The boys, Alison, and I will be taking off this Saturday for some well deserved down time. Thank you so much Mike and Yvonne, we can not wait!

Continued smiles,

Matt

Big Birthday News

mwillis4 — Wed, 20 Oct 2010 20:57:36 +0000

Happy Ninth birthday Nolan and Jack! And to go along with your celebration, Glaxo Smith Kline announced today that it will be providing and additional $7 million dollars in funding to Prosensa for it’s continuing work on PRO051, an exon skipping drug which could change Duchenne!

Please believe,

Matt

Bending Hills for Two Smiles

mwillis4 — Tue, 05 Oct 2010 20:51:23 +0000

This past Saturday over 100 cyclists from around the Northeast showed up for the second annual running of the Cazenovia Hillbender Fall Classic which took place at Chittenango Falls State Park. This year’s courses where a little more tolerable and many folks are already marking the calender for next year’s race/ride. With help from Mass Mutual, Syracuse Bicycle, Richard Cote Insurance, Syracuse Orthopedics, and Wegmans this event will continue to grow for years to come thanks to Jack Stevens and Rick Cote. This year’s Bike-a-thon raised over $2000 for research adding to the event total of nearly $7000 combined…kids helping kids… doesn’t get anymore Two Smiles than that!

Continued smiles,

Matt

Jam On!

mwillis4 — Mon, 20 Sep 2010 20:33:42 +0000

With incredible weather, tons of family fun, great food and Emipe Brewing beverages this year’s Jam was hard to beat. And with 800 folks showing up to give it there best, the only thing that could’ve added to the days splendor was the incredible fireworks display that Majestic Fireworks provided just before Donna the Buffalo took the stage. All in all, a very successful day for everyone inolved and one that will be hard to top in 2011. Thank you to everyone who pitched in, we couldn’t have done it without you!

Continued smiles,

Matt

Donna The Buffalo Headlining the Jam

mwillis4 — Wed, 18 Aug 2010 20:20:59 +0000

That’s right Two Smiles supporters…this year’s Jam will headline none other than national recording talent “Donna the Buffalo”! Save Saturday, September 18th and make plans to attend the biggest event the East end has seen in years!

Continued smiles,

Matt