Health Tests - October 2009

This post is to celebrate Kennedy's continuing great achievements in middle school. Her tenacity, great attitude, and willingness to try hard at school is just a testament to what an amazing person she is. There is, however, another reason why I'm writing. It is because of so-called professionals who are ignorant about CHARGE syndrome giving out bad information to families who have young babies or children with a recent diagnosis.

Twice this week, there were messages on the CHARGE listserv about bad information. The most recent was that a hearing specialist told a mother of a 13 month old girl that most people with CHARGE never talk and that they don't progress cognitively beyond the infant stage. As the parent of a child with CHARGE, I was so offended; I can only imagine what individuals with CHARGE think about comments like this. Those of you who know me can imagine my response to this: I was outraged!!! I gave the mom a lengthy response but I'm just so offended when "professionals" give out information like this to parents when, in fact, they really haven't done a modicum of research on the topic. I asked this parent to ask the hearing specialist where she got that information; I'd love to see the reaction on that.

This just really underscores the need for more public awareness about and more accurate information out there about CHARGE syndrome so no parent has to hear ridiculous prognoses like this. In that vein, I will post these 2 tests that Kennedy has taken in Health on the male reproductive system and on puberty changes between males & females. The first shows how she had to learn to accurately identify all parts of the male reproductive system; the second is deciphering which puberty changes occur in both females and males. She had to read and do these independently. I challenge most men to accurately label their own reproductive system and Kennedy worked very hard to study and did great, scoring A+ on both. Secondly, I will leave a link to our 2nd Annual Charge It for CHARGE campaign, which helps support the CHARGE Syndrome Foundation and its mandate to help families, assist research, and provide (correct) information to professionals about CHARGE. If you would consider making a donation to our family donation page, it would be greatly appreciated.

*Note: You can click on either of these photos to enlarge them.

Male Reproductive System Test (she also knows what each part does; that test is next Friday):


Puberty Changes: Male & Female (read and identify which occur in both):



Click here for our 'Charge It for CHARGE' Team Donation Page - Thank you for your consideration of this worthy cause.

9th International CHARGE Syndrome Conference

We are back after an amazing conference in Bloomindale, IL. It'll take a couple of days to really process and digest all that went on at the conference: new friendships made, old friends reconnected, information learned, joyous events and people celebrated. It really was a great conference of firsts as Brownie Shott, our conference chairperson, pointed out in her address to the group: online registration, conference idol, professional day, and more. It was so exciting and really an honour to be a part of it, both in the planning & execution of it as well as to be there with my family, taking part in it all.

Today I'm uploading pictures and splicing video clips (and doing a gargantuan amount of laundry) but I will put my thoughts down a little more in depth very soon. For now, here are some of my photos I uploaded this morning:
http://www.facebook.com/album.php?aid=142098&id=587985427&l=d8fe284026...Enjoy!

I have some more pics, but am saving some for the CHARGE conference edition newsletter, especially of the awards presented, etc. If any of you have photos, stories, quotes about the conference, etc, you'd like to submit, please send them to me. The more the merrier! Click here for my email: Email Lisa.

Charge It for CHARGE

I know most of you may have heard of this already via email or on my Facebook page, but I wanted to ask that if any of you are considering any type of donation to a charitable cause this year, I would urge you to support the CHARGE Syndrome Foundation. I'm not big on 'blegging', but this is cause near and dear to my heart as they have been a great source of support to my family over the past ten years.

The Foundation has a new campaign going on called, "Charge It for CHARGE" and people can donate, or set up their own fundraiser page to become a fundraiser themselves. I have set up a "Charge It for CHARGE with the Weir Family" page at this address:
Click here to Charge It for CHARGE with the Weir Family. You can make a donation right there, or use the buttons on the left side of the screen to join in the fun and become a fundraiser yourself!

Thank you in advance for considering a donation to the CHARGE Syndrome Foundation!

Sincerely,
Graeme, Lisa & Kennedy Weir