wolfhirschhorn.org at 11 months

by KevinO on January 24, 2011 · 9 Comments · in General Information, Social Media

I wanted to write and let everyone know how we are doing in our quest to tell the world about WHS. It’s been almost 1 year since the original wolfhirschhorn.org site was launched and we’ve come a long way. I’ve been preaching my vision on a regular basis and I want to save that for another time. Now is the time to talk about what we have collectively accomplished in the past (almost) 12 months. Here are a few facts that I wanted to share with all of you.

The site went live on March 6th of 2010. The base of the site included only posts from Kendall’s blog that I imported into this site. So, taking out her previous posts, here’s where we’re at.

  • 124 story posts from the entire community
  • Posts from 30 different authors
  • 471 comments
  • 287 pictures

As far as site statistics go, I found these to be quite interesting. Stats are from 3/6/2010 until 1/21/10.

  • 11,581 visits to the web site
  • 36,511 pages have been viewed
  • The average person looks at a little over 3 pages per visit
  • The average visitor spends just over 4.5 minutes on the site
  • 35% of the traffic to the site comes from search engines-this is a significant statistic
  • 44% of the traffic comes from referring sites. Facebook, Wikipedia are the predominant sites, with your personal blogs being the rest of the referring sites
  • Search engines are bringing people to the site through various key word searches that include the words wolf, hirschorrn and syndrome
  • Our site has climbed near the top of all searches for people looking to hear about and learn more about WHS
  • The first month of the site being live, there were 668 visits. Over the past 30 days, there were 2056 visits. We’ve clearly stepped up the number of people that come to the site in just 10 months.

Most importantly, the statistic that is not measured is the one that includes the impact we’ve made on other families. There have been at least 10 families that have reached out to us upon early, or prenatal diagnosis. This  to me, is the most important stat to keep track of.

So, there you have it. If you want to know more, shoot me a message at Kevin. I’d be happy to share any information.

Thanks for all of your contributions! Let’s double the effort in 2011.

 
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9 Responses to wolfhirschhorn.org at 11 months

  1. Cathy says:
    January 24, 2011 at 9:41 am

    What a journey from where we started – desperately scouring the Internet for any facts, statistics, and stories to help us understand what Wolf-Hirschhorn meant. Talking to genetecists who had as many questions as we did, visiting specialist after specialist to determine what our future held – all complete and utter efforts in futility. Although we, as a group, still do not know what our collective futures hold, at least we have come together and have been able to portray the positive aspects of what our children have brought to this world. When I initially saw the Wikipedia review with the WHS child’s cadaver headlining the article I thought we were in for nothing but heartache and pain. This site has brought us all together and has reminded us that all life is precious, and that we are blessed to have this unique beauty in our lives every day. Thanks and all my love to our moderator, Kevin. 🙂

  2. Greg says:
    January 24, 2011 at 5:42 pm

    Brodie is my grandson. I look at your website every night just to keep up with the progress of the children. I feel like I know everyone of them. sometimes I laugh and other times I cry. As a grandfather of a child with WHS I know firsthand about the hurdles that our little ones must climb. I am so glad for this website and the help and encouragement we get from the other families. I pray for all of you often.
    Thank you Kevin. Great idea. Something that truly makes a difference.
    Greg Flanary

  3. KevinO says:
    January 24, 2011 at 9:38 pm

    Greg- Thank you for visiting and providing input. It’s great to hear that everyone’s contribution is making a difference. It’s also great to hear that the Grandparents are keeping up with the kids(even though not all of them get on the computer every night!).

  4. Anna says:
    January 24, 2011 at 9:41 pm

    You have done a wonderful job Kevin! I can remember desperately searching online for information and finding nothing much at all. Now, parents have this great site as a first stop. Thankyou for all your hard work.

  5. BreB says:
    January 25, 2011 at 4:20 am

    I would like to say thank you, thank you, thank you. For me it was a life line of hope that I desperately needed 11 months ago. Eve was born on the 4th March 2010, so I am very grateful that you went live when you did!! I did the usual searching through endless medical sites and would cry, when I came across this site I smiled. That was the moment I realised this was the information I had been searching for, this was going to be the reality of what Eve’s condition would mean for her, us and our family. Keep up the good work, keep up the posts, I love seeing what all these cuties are up to!

    Breanna – Mum to Eve 11 mths

  6. crivera75 says:
    January 25, 2011 at 9:48 am

    Kevin,
    Thank you for all you do for all of us. I visit the site daily and love the pictures of the smiling children!

  7. KevinO says:
    January 25, 2011 at 10:21 am

    I couldn’t do this without all of you. All I am providing is the platform for the stories. It’s your stories that are making the difference. Just keep them coming!

  8. christy shields says:
    January 26, 2011 at 5:09 pm

    I just want to tell you THANK YOU for all of your hard work you put into this. I am from a small town and I have just felt so alone with dealing with WHS until this site. My oldest daughter ended up having to do a research paper over WHS and she found this site and showed it to me. It has just made me feel so happy to read other happy stories. It also shows me how God works too. Out of all the genetic disorders out there my daughter ended up pulling the very one her sister has and it brought our family here. I feel this site is just another blessing from God.

  9. christine spencer weatherley says:
    November 7, 2011 at 5:40 am

    I thank you from the bottom of my heart for this site and for the inspirational letter to a new mother….it was all that I could find that would help my daughter when Grace was diagnosed. The health authorities have nothing to match it..how could they only experience and love can match it all they have is medicine.

    I visit the site often and am happy to see Grace as one of the family…

    Bless you all

    Christine

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