2012 Families For HoPE Family Conference on Holoprosencephaly!

Hello, Families with HoPE! In our previous blog entry, I mentioned the announcement of next year’s HPE conference!! Here’s the info, if you haven’t seen it yet…

Families For HoPE is excited to announce that the next Families for HoPE Family Conference on Holoprosencephaly will be held in Charlotte, NC in mid-summer 2012. Families For HoPE is hard at work planning a fun and eventful time for families to mix, mingle and “Share the HoPE!”

 This conference will be more centered on issues relating to daily life with our children than it has been in the past. Sessions will be a combination of specialist lecturers, hands-on activities and group roundtable discussions.

 Sessions may include topics such as:

            Alternative PT options

            G-tube issues & concerns

            Visual Impairment Therapy Ideas

            Beginning Speech sounds

            Communication options, low and high tech

            Nursing Care issues and concerns

            Special Needs Trusts/Will planning

            End of Life Realities

            And much more!

Families For HoPE is also hoping to have a return of the SibShops programs for older siblings and some other fun activities lined up for both the children with HPE and their siblings.

 For the families who have lost their precious children, Families For HoPE plans to have their traditional balloon release and memorial activities, as well as some parent and sibling sessions led by KinderMourn grief counselors specializing in child loss.

 Before the conference, Families For HoPE is asking all of our families, both those who will be attending and not, to “Share the HoPE” by responding to requests for information and ideas on a variety of topics. Families For HoPE will then put the responses together in a conference notebook filled with ideas pertaining to these different issues. Look for the questions to be posted soon!

 Keep your eyes and ears open this fall for firm dates and registration information. If you are interested in attending, Families For HoPE asks you to send your contact information and number attending to Molly_Johnson@FamiliesforHoPE.org, and/or go to our website at www.FamiliesforHoPE.org to register or update your contact information for our database (please note that you hope to attend the 2012 conference). It looks to be a fun-filled time with way too much to do and learn, so start your fundraising and make plans to attend!

Families For HoPE looks forward to seeing you all next summer!

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