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
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
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
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
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
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
07 Nov
Posted in Research updates, Two Smiles News on 07.11.09 by Merlyn
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
