An amazing and rare story…

Rare children

1996: “Why don’t you make a website?” Stephanie e-mailed me. She did it herself and explained that is was not very difficult. So I did. I knew, as Stephanie did, that the Internet was very helpful in finding information and other parents with children with a very rare chromosomal disorder. Moreover, if you don’t find a child with exactly the same rare chromosome disorder, it is good to be in touch with someone in the same situation ánd the same drive to find out more. In those years we had a lot of contact and ideas and shared it via e-mail.

stephanie

In January 1997 I published my first website about the European Chromosome 11q Network, now Chromosome 11. The network still exist, I am not very active anymore, but  Stephanie st Pierre is still active in her network and the website. We still have contact. Hardly via e-mail but mostly through Facebook.

What is amazing:

  1. Our first contact is via snailmail in October, 1995, thanks to a list in a Newsletter from Unique were our daughter Geertje (born 1980, died 2000) was listed. Stephanie decided to write me on behalf of her daughter Maia, born 1995 with a chromosomal disorder that seemed similar.
  2. We both used all means to find other families with a disorder on chromosome 11 and internet made it so much easier!
  3. We started mailing in 1996.
  4. Stephanie started the 11;22 international network and later chromosome 22 central, my husband (Rob Jongman) and me started the European 11q network and we stayed in touch because we became (online) friends!
  5. We already adopted children. Stephanie and her husband adopted two children from China.

Amazing meetings

The story continues with another mother. Meet Miranda Kruijer-Bruin and her husband, they adopted children from China and South Korea, one of them is Faye. In the beginning of 2012 Miranda was looking for an e-mail list on the internet for parents with children from the same children’s home as Faye and happened to see a picture of Jaida, Stephanie’s daughter. She saved the picture and was not able to do more with it at that moment. Some months later she joined Facebook and found Jaida and the St Pierre family. Seeing more and more pictures of Jaida she noticed a lot of similarities to Faye. She did send an e-mail and the families got in touch. In the end the families decided to have DNA tested and it turns out that the girls are sisters! They met in Canada in 2012.

sisters2012

What is amazing:

  1. Another mother used an opportunity to find out information; she checked the Internet.
  2. Thanks to FACEBOOK she found the sister of her daughter.
  3. The girls met and are very very happy as are their families (and friends).
  4. This family lives in the Netherlands, like we do!

Of course I read the story of the girls on Facebook and found it amazing. But there is something in it for me too: Stephanie and Jaida will be visiting the Netherlands in august 2014. So finally: after nearly 19 years I will meet my online friend Stephanie St Pierre!

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Social media and being rare, a good match

“It is a hype, it will be blown away by itself, it is a ‘dot-com bubble “. I get a bit tired of those remarks on social media, but I do recognize them as well. I heard them before: at the end of the nineties about internet. I went online in 1995, now in 2010 I am totally into social media. And still I think that especially internet and all new possibilities – like social media – are a tremendous aid for rare disorders and diseases.

Back in time, web 1.0

In December 1995 internet arrives in the Jongman-van Betuw home. The first e-mails with the USA and Canada are being exchanged. I feel ‘flabbergasted’. We send information via e-mail about rare chromosomal disorders on the long arm of chromosome 11 (=11q) and I think “wow, this is fast”. I also think ‘update my English’, because in April 1996 I visit the very first ’11q’ conference, in Dallas USA. This has been agreed by telephone and through e-mail (!) with the organisors. For the first time I meet children with a similar disorder as our daughter.

My Canadian internetfriend Stephanie St-Pierre starts a homepage on ’11:22′ , later the chromosome 22 network. She mails: why don’t you start a homepage too? Me? From my husband (credit where credit is due) I receive the book ‘Beginnen met zelf World Wide Webpagina’s maken’  (The complete Idiot’s Guide to Creating an HTML Web Page) and I start. Januari 1997 the first homepage of our European Chromosome 11q Network is online.

We are not the only ones. During the next years all over on the web networks for rare disorders and diseases are being set up: big, small, for a child, for a big group, in many languages but more and more at least in English; it is a patchwork. Thanks to the internet we find and meet faster and better than in earlier days. Very striking: especially rare disorders and diseases go international, country borders are often too limited.

Summer 1998, the first conferecne of the European 11q network in Lunteren/Ede (Netherlands), agreable close to home. Afterwords we move the conference to Germany; in autumn 2009 the sixth conference is organised there. We know that most ‘new parents’ find us via internet. The homepage is now called website and has been updated many times. An Italian father and his brother-in-law keep it updated. The network can also be found on Facebook and has a lot of international contacts to other networks: online, offline, IRL. I am not active anymore since some years.

Web 2.0, social media

But blood is thicker than water and I give one more presentation about the impact of a small parental network at the Eurordis Conference in May 2010 in Krakov, Poland. I think the ‘parallell’ workshop on online patient networking is equally important. It fits the workshops social media, which I am now presenting in the Netherlands.
My presentation is called Taking part in the online evolution. It is a blink to the online revolution, the YouTube movie. I choose this title, because this is what organisations for rare disorders and diseases do, there is an evolution going on, they adapt (survival of the fittest). They use the possibilities of the internet, chaotic, structured, everyone in his own way. Search for yourself, you will find rare disorders and diseases on Flickr, Youtube, LinkedIn, blogs, locally, international.

A strong example is Unique. With their permission I presented these figures (May 2010):

>7300 members, 77 countries
—Hard copy magazine posted
to >3570 member families—
Electronic copy emailed to nearly 3000—
Discussion forum website 2500 members—
3658 fans on Facebook, 50 new fans per week—
1200 – 1500 visitors to Facebook page each week—
130 followers on Twitter—
>9000 unique visitors website per month—
A lot of new families are discovering Unique first through social networking sites eg Facebook

Towards the future

Did we use internet to find information and eachother, now there is an overload. You must learn how to search, you must understand how social media ‘work’ and English still is a problem. However: internet and social media are the future. Internet gave new possibilities, thanks to social media there are even more possibilities to find and meet. Moreover, finding is faster than ever.

My advice: it is an evolution. Join and share, add your own talents. Enjoy all the different cultures. And realise that the youth already is mobile and online.