We, the New Jersey families of Parent Project Muscular Dystrophy, have been chosen to launch a new outreach program. The idea is to join all families together in a collaborative effort for fundraising, advocacy, healthcare education, and care models. The program is called Duchenne FACES - Families Advocating, Connecting, Educating and Supporting.
At a time when the Duchenne community’s hope is so high and the economy unfortunately is so low, we need to work together to keep up our fundraising efforts and to keep funding the programs that hold such promise for the future. Programs that will help all boys with Duchenne.
There are many things that we, the Duchenne Community, would like to see come to fruition. First and foremost would be more fundraising money for PPMD to put into the hands of some of the new therapies and research studies discussed at conference.
Secondly, as we have just witnessed, NJ has huge power in our advocacy efforts. Due in part to our group effort, we were able to get the MD Care Act Reauthorization bill out of committee and then signed into law. We also had the third highest amount of House Reps co-sponsor, as well as both Senators. Our momentum needs to continue and this is a tireless job. Together with PPMD and Cornerstone Government Affairs, we can each do a little bit to accomplish a huge amount.
Third, we are all well aware how important the primary care physicians’ role is in helping our boys obtain an early diagnosis. We would like to take a team approach to getting the information fliers out and into the NJ MD’s offices so that future boys can have a better shot at early diagnosis. Because we all know that early diagnosis equals better long term outcome.
Lastly, we want to make sure we have a care model across the spectrum that is equal. We want to make sure all boys are receiving the appropriate and most up to date care. By comparing notes and talking about where our boys are currently going for care we can share what places are up to date and which are not. This will be particularly useful to newly diagnosed families in NJ who are at a loss as to who to turn to for care.
As a whole, all of these ideas are daunting and let’s face it, who really has a lot of extra hours per week to contribute to conquer everything? But if we could all band together and each family take a small portion and have the support and resources of the whole group, everyone can be successful. We need to aim higher, our boys deserve nothing less.
We would like to meet every other month, in central NJ, to formulate ideas and put these ideas into action. We have chosen November 22nd as our first meeting date from 1pm -4pm. Based on the RSVPs, we will then determine the meeting place. Children can certainly come and we will provide babysitters and crafts to keep them occupied, so we can all focus. Pat Furlong, Kimberly Galberaith, and Ryan Fischer will be present for our first meeting. We will provide snacks and refreshments. Please contact me, Jen Garofalo, as soon as possible if you are interested in attending so that we can reserve a space - NJFACES@parentprojectmd.org.
I am honored to be a part of a state that truly already does their part. We are very excited for this new program and the chance to get together. I look forward to hearing from you.