SSSA of Finland



Pictures

 

 

Welcome to the Finnish Sotos syndrome families web site!

The Finnish Sotos syndrome families support group was started in 1997 and we provide peer support to families with Sotos syndrome (including 5q35.2 deletions, sotos like and undiagnosed overgrowth conditions). We are a small independent and self financed group.

Due to the long distances we stay in touch thru our e-mail list and chat.
 

2007

In June 2007 there was a financially supported spa holiday for Sotos families.

We had a representative at Eurordis meetings for the first time. http://www.eurordis.org/

The "grass root" place in internet for rare disease persons and support groups in Finnish was opened: http://www.harvinaiset.net/
The blog: http://harvinaiset.blogspot.com/

We have no national rare disease alliance in Finland!  :(
See other national alliances:
http://www.eurordis.org/article.php3?id_article=255
 

2008

In August 2008 we had a weekend meeting for the families. Our favorite activities were sauna, swimming and BBQ by the fire on a beautiful lake shore. The traditional volley ball match was played despite the rainy weather.

Our chair person Mika Vilppolahti performed his stand up comedy act for us to celebrate his election. This year the young adults took a prominent role in organizing the groups future activities.

We Sotos families decided to support the initiative "by the people" for a Finnish national rare disease alliance. We hope to influence it's creation and collaborate with other rare disease groups.

This year we are happy to have met new families, grandparents, and proud to hear about new drivers licenses.

We now have a volunteer sports event planner. Many of Sotos children and adults have benefited from horse riding therapy and have continued to ride as a hobby if it was possible. There is now also a precedent in placing an adult Sotos rider in the special needs riders competitions classes.

Only a minority of Sotos persons have gotten married, had kids, have a drivers license. Equally, only a minority is eligible for the services for the intellectually disabled. Most are somewhere in between.

The challenge for the future is finding solutions that would lead to smooth transition to employment and independent living.
 

2009

 - put 'em on a horse
Plans for summer 2009 include a financially supported spa holiday for the families.

We are looking forward to a horse riding camp in September 2009.

http://www.huittistenratsastuskeskus.fi/Default.aspx?id=29
 

Contact
If you wish to contact us, please e-mail or call the contacts on the contacts page. We will forward your message (but no attachments) to our members.
We have a closed yahoo e-mail group in Finnish.

In english please e-mail: sotos@sotos.fi

   

 Finnish page (Takaisin)

Page updated 2008-08-24 (ISO 8601)