Post-Reunion Update!

The welcome sign that the hotel and conference center put up for us!

The welcome sign that the hotel and conference center put up for us!

Good day, 9p-Minus families and supporters!

We just finished up another wildly successful reunion, and we on the Board of Directors wanted to make sure to update you on what went on behind the scenes while we were there!

We held 3(!) Board meeting while we were there, and we were able to accomplish a great deal in the time we had together. In that time we went over:

  • Reunion Agenda
    • We felt that the flow of the weekend was the perfect mix of free time and together time! What did everyone else think?
  • People who need thanked due to their tireless help (which we will send out physical thank yous to)
    • All of the volunteers did an excellent job helping us out at the reunion! The helpers handled our children wonderfully, and there seemed to be no incidents!
    • The photographers seemed to always be there, and the pictures that we did see turned out beautifully!
    • All of the groups that did performances were great! Our kids behaved very well during all performances!
    • Our brand new genetics team was super accommodating, and met with people whenever the families were able to see them. I was so impressed that they flew out to us from California, and they were able to answer a lot of the questions posed to them, AND they put on a wonderful talk on Sunday after only knowing about our Network for a little over a month. Wow!
    • The hotel was really on the ball with all of the arrangements. I think everything was taken care of very professionally!
    • The Zecchinelli’s did a FANTASTIC job with this year’s reunion! There was not much for the Board to do besides enjoy ourselves!
  • Current committees
    • We’ve decided to compact the committee structure and tackle things as a Board so that we can support each other more.
  • Current officers
  • New Board members
    • We had quite a few people step forward to say that they can help out on the Board in the future. It was so exciting to hear that people are able and willing to help out behind the scenes! If you are able to help out on the board, or would like to help the Network out in any way, please email one of the board members!
  • Future Reunions
    • We had a few families come forward to say that they are willing to host future reunions. Some of the options are Lousiana, New York, and Iowa! If you are able to host a future reunion, please just email one of the board members so that we can put you on the list!
  • Fundraising
    • We discussed our current fundraisers, and discussed ideas for future ones. If you have any ideas, please send one of us an email. We are always looking for new ideas!

 

If you have any questions or comments, please feel free to send any of us an email. We want everyone to see what we do so that you understand what goes on behind the scenes.

Have a great day!

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…]

css.php