As most of you in the Marfan syndrome and related disorders community probably know by now, during our annual conference last weekend our foundation (formerly the National Marfan Foundation) unveiled our new brand, complete with a new name (The Marfan Foundation) and logo:

Obviously, this came as a surprise to people, and our logo is a significant change. Of course the big question is “why change anything?”. The answer is a little long for a Facebook comment, especially when people are asking on multiple posts on both my personal and blog pages, so I promised to write a blog post about it.

Please realize: these are MY thoughts and opinions as someone who participated in this process (I’m a member of the Foundation’s board of directors), and NOT any kind of official statement from The Marfan Foundation. For an official statement, you can go here. More will be coming from the Foundation once the new website is up and running in a few weeks.

I’ve been an active member of the Foundation since I was 13 years old. Since that time, our community – the Marfamily – has accomplished some awesome things. We, with the help of our support center and the Internet, reach thousands of families all over the world and connect them with information, support, and medical care. We offer research grants, both to seasoned researchers and up and coming stars. We founded the Thoracic Aortic Disease Coalition to collaborate with other organizations. We’re seen as a leader internationally. We’ve given hope when doctors said there wasn’t any, and we’ve saved a whole lot of lives.

All this over less than 35 years, having started as a group of four women and Dr. Pyeritz, in Dr. McKusick’s living room. Not bad, eh?

As we have continued to grow however, many questions have come up: How do we want to serve/partner with other related disorders? What are our goals now that we’ve achieved a longer life expectancy? How do we increase visibility and take fundraising to the next level? Given that most people get their information online, how do we make sure people can find us and access the services that we have to offer? And how do we make sure that we’re meeting everyone’s needs?

So, two years ago we started interviewing companies to help us take the Foundation to the next level. This process wasn’t about creating a new name and logo, it was about answering those questions above. The Foundation sent out surveys to the entire community to get feedback about our website (which I think we can all agree needs major updating), as well as to learn how members of the Marfamily view the Foundation: what we do well, what we can improve, what makes us us. There were interviews with volunteers of all ages, as well as with physicians. Staff and board members met with our branding company regularly. I found it to truly be a collaborative process: the company was not just handing us things and saying this is what you have to use. We gave feedback and made revisions. As we answered those questions I mentioned, a new name and logo evolved because we realized that what we’d been using wasn’t fully serving our purposes before.

The new name demonstrates that we are the leader in our field. It does not mean that we are now an international foundation, but I think it reflects that people from all over the world look to us for information. It also puts the focus on Marfan, which is what people know us for. And besides, many people were already calling us the Marfan Foundation anyway!

I was initially resistant to changing the name or the logo. I don’t like change. Our logo was beautiful and warm. The NMF was a nice nickname for those of us who knows what it stands for. But, for others who didn’t know, it may have made them feel like they weren’t “part of the club” (that’s what acronyms do – they are not inclusive). As we as a board and staff went through this process, I changed my mind about not making any changes. I still believe our old logo is beautiful and warm, but I don’t believe the heart or the initials really communicate who we are anymore.

First of all, we had multiple logos. We had a logo with our full name and one with initials. We had logos for every conference, and logos for every chapter. We are a cohesive community and that isn’t cohesive. Plus, when we used the initials, we weren’t saying Marfan and that was a wasted opportunity to educate.

Second, Marfan is about so much more than our hearts. Concerns have been voiced by members of our community that the Foundation isn’t paying enough attention to non-cardiac issues. Until the start of our new “Quality of Life” task force, almost all of our research funding was going to cardiac or genetic studies. Not everyone is affected cardiovascularly, and now that we’re living to old age, there are so many other issues to address. Marfan syndrome is not a heart problem, it’s a complex connective tissue disorder. A heart logo gives the initial impression that this is just something that affects the heart, and that’s not what we want to say. I know that it’s the aortic issues that are life-threatening, but then again, lung issues are also life-threatening. And, once you have aortic surgery, there are daily issues that progress and fairly significantly affect daily living.

Furthermore, basically every single other cardiovascular organization uses a heart in their logo. We want to stand out from the crowd. We have to stand out from the crowd in this time of decreased donations and research funding. Yes, I realize that sounds a little harsh or corporate, but the reality is that in order to pay for the programs we currently offer, let alone develop new programs and additional research grants, the Foundation has to be fundraising. I’ve come to learn there is a science behind logos and branding. Whether I think the new logo is the Best Thing Ever or not is less important to me than whether it’s going to accomplish what we need it to so that we as a community can be doing more to touch and save lives. I truly believe this re-branding, logo included, is going to help us do that.

I also want to add that we’re not doing away with hearts totally! Just because one isn’t in the main logo doesn’t mean they won’t appear other places. I know our HEARTworks gala is going to remain as such, for example. And, when we use the heart, it will have greater meaning because we will use it selectively.

The new logo, for those that haven’t seen the explanation, was designed to emphasize the word Marfan, which could get a bit lost in the shuffle before. That word is the most important takeaway from our logo. The graphic – two overlapping links – represents the connection between Marfan syndrome and related disorders. Personally, I also think it looks a little like links on a DNA strand.

We also have a new tagline: “Know the signs. Fight for victory.” Previously we had multiple taglines. (“Know the signs. Save a life,” was for the emergency medicine campaign. “Educate. Support. Research,” was our general one. There may have been others.) This will appear on everything. I’ve seen some questions as to what victory means, and whether it means cure. Victory does not mean cure here. The victories we’re fighting for are both big and small, and what victory means is different for every person. For some, a victory is getting out of bed in the morning. For others, it’s having a successful surgery. One of my greatest victories was having my babies, and that is a victory that is not yet available to all women who want it. These are victories worth fighting for. It’s why I started this whole blog in the first place.

I am proud of where we’ve come from, but we have so far left to go. There will probably always be more for us to do, and further evolutions of who we are to get us to those points. If you love the changes, great! If not, I’m not asking you to shove aside all your feelings right now and agree with me (though civility is appreciated!). I mean, our board of directors doesn’t agree on everything all of the time, so why would the Marfamily as a whole?! What I am asking for is patience, and a continued dialogue. I’ve taken the feedback I’ve received over Facebook back to the Foundation. I always do, whether it’s positive or negative. The name and logo are set, but other things are evolving. As the new website is released in a few weeks, let me know (or the Foundation directly, via Facebook or email) what you think. Ask questions, suggest tweaks to programs (or suggest new programs). If you’re not already involved in a volunteer capacity, consider it.

If you have questions about what I’ve written let me know, and I’ll do my best to answer. And always know you can contact the staff directly as well!