PKS Events

Michele Stobbe is running the Chicago Marathon on 10/9/2011 in honor of her cousin Samantha Stobbe. Donations to PKS Kids on Michele's behalf are gratetfully accepted via paypal (button below) or by mailing to PKS Kids, PO Box 94, Florissant, MO 63032-0094.

Samantha

Our beautiful daughter Samantha Stobbe is just about 2 1/2 years old and was born with an very rare genetic disorder called Pallister-Killian Syndrome. This is a syndrome that affects Chromosome 12 and is actually a double duplication of the "short arm" of this chromosome. This results in global developmental delays and can range in severity.

Samantha's severity is profound enough to warrant all kinds of therapies such as Vision, Speech, Swallowing, Occupational and Physical. She has made some progress but does it at her own pace. Some of her progressions have been her ability to roll from her back to her tummy. She is also developing her personality more to where she can smile and laugh some when we play with her. Even these small progressions are such a wonderful site to see and experience which continues to give us hope for her future.

We are elated that Michele has chosen to dedicate her run at the Chicago Marathon for PKS Kids on behalf of Samantha. We cannot express enough of our deepest thanks to her and we wish her only the best on her run!! We want to also thank in advance all of those who will not only donate to support Michele and PKS Kids but can spread the word about this rare syndrome. In our hearts, a person made aware of this disorder is as good as a dollar raised for PKS Kids.

Thank you again for your support!

Christopher & Carla Stobbe

Dear PKS Families,

We want to let everyone know that PKS Kids is 100% committed to providing support for families impacted by Pallister Killian Syndrome while working with the medical community to raise awareness and conduct relevant research. As you would imagine, we are a small, but growing non-profit. As a result, we need to focus our efforts.

We will continue to plan, sponsor and coordinate The PKS Medical and Family Conference, in conjunction with the doctors at the Children’s Hospital of Philadelphia, every other year. These conferences will be on the even numbered years with the next one being in June 2012. We will send information about specific dates as soon as possible.

For the odd numbered years, PKS Kids tried, in the past, to coordinate “family gatherings” that are less structured and meant to take place at varying locations. We have decided, as an organization, to leave the family gatherings to all of us families! We are all better served with smaller, local gatherings that keep costs and travel time to a minimum. And most importantly, we want PKS Kids to focus on putting together the best possible conference every other year.

We will, of course, continue to provide the forums to discuss and plan these off-year gatherings via our websites at www.pkskids.com and http://pkskids.ning.com/ .

Our best to you and your families and we hope to see you all in person in June 2012!!!

Sincerely