Post-Reunion Update!

Good day, 9p-Minus families and supporters!

We just finished up another successful reunion in July 2017 in Sulfer, LA.!

Lots of information was shared between families as well as between our wonderful research doctors out of Washington University Physicians Group, in St. Louis, MO.

A special thanks to Dr. F. Sessions Cole and Dr. Dustin Baldridge for attending our 2017 Family Reunion and updating us on the latest genetic research and giving us strong medical advice.

The host family, Nathan and Kristen Nazworth along with their wonderful friend, Donna Whatley, did a fantastic job of planning, fundraising and pulling off the most wonderfully informative, fun and exciting family reunion yet.  They have set the bar high for our 2020 Family Reunion in Iowa.

 

Looking forward to the next 2020 Family Reunion!!!

The 9p Minus Board of Directors

 

Welcome to the newly updated Chromosome 9pminus Network website!

Drum roll please…..Ta da!  Welcome to the newly updated Chromosome 9pminus Network website!  After months of work and careful planning, the Network’s Board of Directors is happy to “go live” with a webpage that we hope you find to be more informational, more attractive, and more user-friendly.

Please take some time and look over the information contained within 9pminus.org.  Here are a few of the highlights:

  • Dr. Alfi graciously wrote a segment for our tribute to him and his work for 9p Deletions.

  • The Membership Services Committee now has an Enrollment Form that allows for seamless enrollment of new members.

  • Unique’s Disorder leaflets are readily available under “For Families.”  These are excellent sources of information to share with teachers, therapists, and physicians.  A special thanks to the staff at Unique for their permission to provide a link on our website!

  • “About 9pminus Syndrome” contains a document entitled “What is 9pminus Syndrome?” It was created within our BoD as an informal document containing information explaining 9p Deletions in further detail. We hope you find this helpful! [Read more…]

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