ROBINOW SYNDROME - RARE DWARFING DISORDER

Eleven years ago Kelsey was born with Robinow Syndrome, a rare genetic disorder.

From June 17 - 26 Kelsey's mother and father Karla and Kevin, have opened their hearts and home to people from all over the USA and Canada. This was the largest gathering of people affected by this syndrome, ever!

Families came together to share valuable medical information, provide support and meet medical professionals whom are interested in making a better future for those affected by the syndrome.

"We're one big, happy family - with an unbelievable bond that is hard to explain!" says Karla. "It's like we have known each other our entire lives."

Karla and Kevin are the parents of two girls, Kelsey (age 11) who is affected by the rarest form of this genetic syndrome, and Kadean (age 9) who is unaffected.

"This gathering was a rare opportunity for the children and adults to be with others who share the same appearance and medical issues. The bonds they make with each other are priceless to their emotional support and self-esteem," she added.

Researchers have determined that the disorder is genetically transmitted by either a dominant or recessive gene. Present research has had some major breakthroughs since 2000, in both forms of this syndrome in locating the genetic mutation that is believed to be the cause of Robinow Syndrome. These new findings will allow proper and early diagnosis of the syndrome.

THE CONVENTION

People affected by Robinow Syndrome include: (front from left) Kelsey K., MN; Calvin and Adrian C., SC; and Adrian M., NY. (middle row) Ryland K., MO; Sara H., NY; Laura P., WI; Jeremy M., Canada; and Angela T., FL., (back row) Christina N., FL; Beth T., CA; Sondra holding Hope S., VA; Bob W., MA; and Cory M., AZ.

The convention was organized and hosted by Kevin and Karla.

There are only about 130 cases of this syndrome (documented world-wide), and of those, 22 have the recessive form that Kelsey has. (19 in Turkey and 3 in the USA that they know of).

Guest speaker this year was Dr. Juliana Mazzeu from Brazil, who is actively researching the gene that causes this rare genetic disorder. Kevin and Karla provided food, entertainment and even lodging (for some). "We had a variety of entertainment for both the adults and children. Everyone really enjoyed the live 'pop-rock' music," said Karla, which was played on their deck, Saturday night by "The Boneshakers," and the dinner music which was provided by Soloist Karna Otten, and of course, "from the additional 14 people staying in our home."

"It was very stressful, financially draining and took at least six months of planning, but it was so incredibly necessary and worthwhile." she added.

A portion of the meeting was held at the Andover City Hall, where Karla, two other parents, and the geneticist informed all of their latest news, research, resources and where an unexpected 'Awards Ceremony' took place.

This year's convention could not have happened as smoothly as it did, without the help of these contributors. A sincere 'Thank you' to all of them for their help. (not in any particular order): • Salvation Army, Alexandria, VA • City of Andover • Billy's Bar & Grill, Anoka • Festival Foods, Coon Rapids • Tracy Printing, St. Anthony • Bill's Superette, Coon Rapids • Lashinski Septic, Andover • Wal-Mart, Coon Rapids • Cub Foods, Coon Rapids • Rainbow Foods, Coon Rapids • VFW Post #6702, Andover • Old Dutch, Roseville • American Legion Post #334, Coon Rapids • Anoka County Parks • Kinko's, Coon Rapids • Mello Smello, New Hope • Brush Masters, Plymouth • McDonald's, Coon Rapids • Pizza Hut, Anoka • Target, Coon Rapids.

And those families, who so generously donated: • Ms. B. Davis • Ms. S. Otten • Ms. M. Stocksleth • Ms. M. Bernhagen • Ms. K. Ortiz • Mr. & Mrs. S. Burnham • Mr. & Mrs. D. Petermeier • Mr. & Mrs. F. Unger • Mr. & Mrs. D. LaFlamme • Mr. & Mrs. E. Motzkin • Mr. & Mrs. G. Cook • Mr. & Mrs. F. Hellman • Mr. & Mrs. K. Notch • Mr. & Mrs. H. Kruger • Mr. & Mrs. T. Kruger

And thanks to all our neighbors for their understanding and patience throughout the event.

"Our next convention is set for June, 2004 to be held in New York," said Karla. "Fundraising efforts are continuous to help maintain the Foundation's website, research, newsletters, P.O. Box, postage, medical and travel assistance and to help in aiding families ability to attend our bi-annual gatherings, but are unable to because of the financial strain due to medical expenses." 

For more information or to help out with a tax-deductible donation, call, e-mail or write to:

Robinow Syndrome Foundation
P.O. Box 1072,
Anoka, MN 55303
Ph.: (763) 434-1152
E-Mail: kmkruger@comcast.net

To learn more about this visit their website at: Robinow.org

"Never doubt that a small group of thoughtful committed people can change the world. Indeed it is the only thing that ever has." said Karla, quoting Margaret Mead.