We haven’t finished, but we’ve accomplished a lot.

While we were trying to get back on our feet, a few of our website users left us in disgust. Others got out of the habit of checking in regularly. Thankfully, many people came back and we even attracted some new visitors. But there are hundreds of thousands of people with hypospadias or epispadias out in the world who have never heard of HEA. Their families and loved ones have never heard of HEA. They are continuing to live in isolation, without information or support, and all too often struggling with shame and sometimes outright abuse.

In response, we have decided to reintroduce ourselves to our former visitors and publicize our existence to new folks by having an Online Open House. OPEN is the keyword here:

●  We’re having an all-day OPEN CHAT with experts like Barbara Neilson and

The HEA website at HEAinfo.org has undergone a facelift, an update, and an expansion! We’ve moved to a new webhost (1and1.com) with more room. Travis Harrison, who designed the original website in addition to carrying out original research on hypospadias/epispadias and presenting at many scientific conferences on behalf of HEA, has stepped into the background to pursue some personal projects. In his wake and somewhat belatedly, the website makeover was taken on by Edward Milligan, followed by yours truly. We had some problems: Our right hands didn’t understand what our left hands were up to and as a result some of your emails went unanswered, our new members were never welcomed, and our old members were never told that their memberships needed to be renewed. We discovered that our old message board posts could not be converted to our new website’s operating system. People submitted stories that never made it online. Finally, the site went dark completely, without warning. It was back up within

a day, but things were in a mess!

I was fortunate in that HEA website users started emailing me to let me know what I should be concentrating on (my own priorities were really out of whack and I didn’t even know it) and I got more feedback and encouragement at the Norfolk Conference. I think I’m starting to get the right idea now.

You want us to do everything we can to help people with hypospadias or epispadias and their families talk with each other. You want us to provide a place where you can share what it’s like. You want us to be a clearinghouse for the latest and best information about these conditions. You want HEA to become a worldwide community. You want us to advocate on your behalf with members of the medical and helping professions. You want us to educate the public. You want and need and deserve a voice. We heard you and we’ve been working hard to provide everything you’ve asked for.

 YOU’RE INVITED and you don’t even need to dress up: The HEA Online Open House

Inside this issue:

Hypospadias and Epispadias Association

Current Stream

September 2008

Newsletter for HEA

Special points of interest:

· Online Open House this Sept. 28

· Conference stories

· Chicago DSD
seminar

· New board
members

· What you can do to help support HEA

By Betty Engel, HEAinfo.org Website Manager

Sunday, September 28, 2008, 10am to 11pm US Eastern Time

Cont. on pg. 2