Thursday, November 4, 2010

Update from our Last Meeting ~ October 21st


We had another successful meeting on October 21st. Those of us there talked about all the items we outlined at our previous meeting and came up with the following recommendations:

The members there thought Monthly Meetings were the way to go....everyone said they would miss their "life line" if we did meetings less than monthly. But it was recommended that we have meeting speakers or additional activities only once a quarter. For example we would have an "Out of Area" meeting only once a quarter; first one to be held in Tucson and second to be held in the Verde Valley/Sedona area. On the off quarters from the "out of area" meetings we would have speakers. However if the group wanted to have a particular speaker sooner and it could be arranged, we would be open to having a speaker.

Regarding the "Out of Phoenix Area" meetings, we are still in the thinking mode about arranging and implementation of these meetings. Here are the things that were of concern to us:

Hosting - Thought that a Group Member from the area would be the logical person to Host a meeting Meeting places - We thought that perhaps the Area Host could arrange for the meeting place Time Frame - Most probably on the weekend or Saturday Transportation - Car pool was the thought, but still in discussion stage Meeting Topics - Most likely informal - needs additional discussion Refreshments - Not discussed

As all of you can see we are just in the beginning phase of organization for these Out of Area any suggestions from anyone that was not at the meeting would be extremely appreciated.

Becky has volunteered to keep up our Membership Roster. She came up with the idea of having two rosters. One Public, with only the info you as a member would not mind sharing with others and one Private that has all info on it for our files to be able to call for reminders for meetings and such. Thank you sooo much Becky!!

Finally, Kathie talked about an email she received from a member of our group Sara Eaton and her daughter Mylee Grace. Mylee Grace was diagnosed at a very young age with Chiari and was chosen to represent ASAP as one of the "Faces" of Syringomyelia and Chiari. Many of you participated in the 2nd Annual Miracle Race For Mylee Grace in 2009 and Mylee has since been found to have atrophy of the cerebellum, another neurological condition. At just 4 yrs. old, Mylee has now been diagnosed with an Unknown Primary metabolic Disease. Sara asked if any one in our support group would like to help her out with some volunteer work for an event she was helping put on for the United Mitochondrial Disease Foundation. She said she was finding it interesting that many of Mylee's Chiari/syringo friends were being diagnosed with some kind of Metabolic disease and more than likely a Mitochondrial Disease. She and other mothers were beginning to think there is a relationship between these diseases. So if interested in helping out Sunday, December 19th, 2010 here is the link to the event - or

Well, that's it for now..... again, we would love your FEED BACK. So any additional SUGGESTIONS please email back before our next meeting, November 18th, 2010. We plan to have a speaker for that meeting....SO BE READY TO ATTEND! NOBODY LIKES TO SPEAK TO AN EMPTY HOUSE....MORE INFORMATION ABOUT SPEAKER TO COME.

Thanks for your ongoing support and TALK TO YOU SOON,
Shelley and Kathie

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