I am re-posting a letter from the CDG Family Network. There is talk about a conference held next summer somewhere on the East Coast and if our schedules allow, we would love to try and go as a family to meet other families and hear from the world's experts. Hopefully the conference will NOT be the weekend of July 23rd since Kevin and Hanna have officially picked a date for their wedding, but if it's held in June or the beginning of July we'd love to go. They need money to make this happen. The CDG Family Network does not have a bank account to draw from for this type of event so all the families will have to work together to raise money. I'm considering talking to our local brewpub to see if we could host a fundraiser there. I'm not experienced with this kind of stuff but would really love to try and raise some funds for the conference so that it can actually happen. I've posted the address for donations below. If your employer is looking for charitable causes to donate to...perhaps they'd consider the CDG Family Network this year. Or, if you or anyone you know would like to donate just a few dollars, it would mean the world to us!
Dear Families,
Many people have expressed interest in a summer 2011 conference. In order to make that happen we must raise the funds for our conference -- that is up to all of us as parents, family members and friends. As many of you know, Joyce Daly did a test balloon through Facebook and most of you responded with interest to attend a conference.
We must have a considerable amount of the funds established to confirm our arrangements ---so the sooner we have them the sooner we can confirm dates and location. We are currently looking at the third week of June and 2nd or 3rd week of July. Location is Eastern USA - no specific city has or will be selected until funding is finalized. These are all driven by cost and confirmation of flights, hotels etc for our guest speakers.
I know many of you raise money through Facebook causes directly for CDG research - these funds would be separate and applied to the cost of the expenses of the conference. Each person/family will have to make decisions about the value of a conference to you and your family.
A suggestion has been made for different sponsorship levels - as well as individual efforts towards donations. If you have an interest in securing a corporate sponsor or in being a sponsor please email me directly.
Over the years we have held many conferences and the families who have attended enjoyed as well as benefited from them.
Currently Dr. Krasnewich, Dr. Freeze, Dr. Jaaken, Dr. Miller and Dr. Patterson from our Medical Advisory board have all confirmed their ability to attend. We have other speakers we will invite for additional topics and participation.
If you are willing to donate funds for the conference please send or indicate your donation as soon as possible so that we can plan accordingly to determine the true viability of a conference. We will send personal emails for those who donate and wish to be kept informed of fundraising efforts.
Conference fees for attendance will be established once donations have been finalized. Fees are usually set 90 - 120 days before the event - in this case that would be Feb/March 2011. Fees have ranged from $50.00 per person to $100.00 per person in the past with a maximum of $250.00 per family. Most families secure their own transportation and lodging once the location is announced - with all the discount providers today you can book your desired arrangements for less than what we can book as a group. The full conference is usually 2 days.
Skilled nursing and childcare are provided on site in a room adjacent to our sessions to allow for maximum participation of attendee's.
Donations can be mailed to:
CDG Family Network
P.O. Box 1285
Sioux Falls, SD 57101
Upon receiving your donation we will add your email address to our list of donors - please indicate if your
donation(s) should be anonymous.
Thank you for the support of your Family Network.
Cindy Wren Gray
President
CDG Family Network
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