The Duchenne community is bigger than ever and Duchenne news is coming faster and more frequently than we could ever have hoped for. 2013 is already promising to be a big year in research, advocacy, care, and raising awareness. But…this can be overwhelming. With so much information coming your way, with a barrage of messages and posts through social media in your face, it’s hard to know what’s legit, what’s truly promising, and unfortunately, what just isn’t true.
We hope that you’ll turn to PPMD when you have doubts, questions, and/or concerns. We stay up-to-date on what is happening in our community. We provide you with resources to connect with others on the same journey as you. And we put experts at your fingertips when questions and concerns arise. If you see something in the news or online, chances are we have too, and we’ll be sharing the story along with a brief explanation of what it means. If you don’t understand something we’ve posted, ask questions! We are here to help guide you through the myriad of issues that come up when navigating Duchenne. And if we don’t know the answer, we’ll find someone who does.
Make 2013 the year you join our Community Site. Access to families around the world, leaders in research, and even industry is yours by creating a profile on our community site. It is a great place to start discussions, ask specific questions, and find topics you might have thought no one could relate to. It is a safe online haven for you and your family, so make sure you take advantage of it.
If we know something, hear something , read something – we are going to pass it along to you as soon as possible. Stay in touch with us through our website, RSS feed, Twitter, and Facebook. Social media is our reality today. We know not everyone likes to go online and see who’s doing what. But again, if it’s got our name on it, we hope you feel like it is a safe place to get quality, thoughtful Duchenne-specific information.
Finally, and perhaps most importantly, make sure you are connected to DuchenneConnect. This is one of our proudest resources –a central hub that brings together those living with Duchenne, along with their families, friends, and caregivers, to connect them with medical research, clinical care, clinical trials, and each other. At the same time, it is a valued resource for industries with an interest in Duchenne, allowing access to a database of information provided by patients and their families—information that could prove vital to advances in care and treatment. If a person with Duchenne that you know is not registered, do it today. If you or your loved one is registered, make sure the information is updated regularly.
There is enough to overwhelm you and your family when Duchenne comes into your life. We hope you will look to PPMD as a guide, as a friend, as a group you can trust to find answers and make connections. And if there is something we could be doing better, let us know that too. Let’s continue to make the impossible, possible. Together let’s end Duchenne.
Will Nolan, Communications Director
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