SmileLines

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

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

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

It’s hard to believe that only one year ago Alison and I sat and wondered if we could even make this foundation happen. Suffice it to say, we didn’t. Without the help, guidance and support of so many that gave selflessly to our effort, we would never have gotten it off the ground. From the creativity and boundless energy of friends and family we created something wonderful from the ashes of the nightmare that devistated our lives only 2 years ago. At year’s end we had collected over $62,000.00 and converted 81% into funding for Duchenne research. With most of our startup and operational costs now depreciated into year one, we look forward to increasing the donation to research ratio in 2009. I can’t thank all of you enough for your time, efforts, and unswaying commitment to ending this disease.

Continues smiles,
Matt

As the 30 foot long white limousine pulled onto our street all three of the boys knew something was up. The time had come for a Wish Party! Back in February, the Make-A-Wish Foundation chose Nolan and Jack as “Wish Recipients” and the time had come to unveil their dreams come true. The family all piled into the limo courtesy of Caz Limo and headed to Red Robin where other family members joined us and the party ensued. The boys were greeted by tons of smiles and presents, which were donated by the employees of our local Red Robin. An amazing effort considering they were notified of the party only 2 days prior. Following dinner Nolan was informed that he would be receiving his swimming pool and Jack would be taking the family on a week long vacation to Disney World. They were beside themselves with excitement and it was all possible through the efforts of Make-A-Wish and their contributors. Caleb was also given a wish thanks to his favorite Uncle Ron who earlier in the year rewarded him with a set of tickets to a Boston Red Sox / New York Yankees game to be held at the famous Fenway Park in Boston this September. Three very lucky boys with three very tremendous gifts. Thank you to all who have made this possible.

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

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

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!).