Mito Awareness Week

We hope to have a great time mingling and offering support at our gathering just before awareness week.  Again, please let us know if you will be able to come for tailgating fun and swimming on Sat the 18th 12-3:00. 

At the party, we will be creating buttons for our family members to wear during awareness week…we’ll need to prep them with info so that they’ll have answers when people ask questions.  If you are unable to make the gathering, but would like to have a few buttons made with your child’s picture, just email a picture to me in advance and we can make arrangements to get them to you.

Also, I plan to take some pics and some quick interviews of family members who attend the gathering to create a “commercial” for mitochondrial disease through the eyes of our families here in south Louisiana. I plan to post it to YouTube and send the link to you all to share with family and friends to raise awareness. I plan to also send it to UMDF. Again, if you are unable to attend the gathering but would like me to include some pics of your child in the video, please email a few pics to me in advance.

The UMDF website has LOTS of ideas for spreading awareness.  One of the suggestions was to contact your local TV station to ask them to air the Jack Black public service announcement about mitochondrial disease. You can view it here: http://www.kintera.org/site/c.buIQJcNYKnL6G/b.6087305/k.BDD5/Home.htm I have sent emails to WAFB, WBRZ, and WVLA to request that they air this public service announcement. If any of you have any “connections” with any of the local TV stations, it would be great if you could contact them with this request. If you are able to get a confirmation from someone, UMDF asks that you send them the name of the person with whom you spoke. If you want to let me know, I can forward that info to UMDF.

Mito Indoor Tailgate Party

Please join us Saturday, September 18th 12-3:00 for an indoor tailgate party at the Holiday Inn Express in Port Allen. (2860 North Westport Drive; Port Allen, LA 70767; (225) 343-9967)  We will meet and eat in the Breakfast room.  The salt water indoor pool will also be available, so bring your swimsuits!

We hope it will give us a chance to meet and offer support to each other.  We also have some mito awareness ideas that we plan to pursue to get ready for Mitchondrial Disease Awareness Week, which is the following week, Sept 19-25.  More info on that to follow.

Please respond to this post to let us know if you'll be able to make it, who from your family will be coming, and a dish you'd like to bring to contribute to the tailgating festivities.