Young Adults Advocating for Mito

So awesome that the young adults affected by Mito are taking an active role in educating others about mitochondrial disease!

21-yr old Morgan Rioux of Zachary, LA has taken the initiative to write a letter to Governor Bobby Jindal asking for his support of research and awareness for Mitochondrial Disease.  This is a copy of the letter his office wrote back to her:

The letter states that he has updated the Genetics Program website to include the mito link she sent and they added other links for the disorder.  They also offer subspecialty clinics in 9 regions of the state for those in need of neurology that meet income guidelines.  Their website is http://www.dhh.louisiana.gov/offices/?ID=256

Morgan also sent a letter and the awareness video at the top of this blog to the Dr. Oz Show...anxious to see where that leads!

GREAT JOB MORGAN!

Jack Black PSA

Awesome news!  Lisa Rioux, mother of 21-yr old Morgan who has mitochondrial disease, has gotten a confirmation from Channel 2-WBRZ to air the Jack Black Public Service Announcement for mitochondrial disease this week.  We look forward to hearing more info about it.  Thanks Lisa!

Mito Tailgate was fun!

Thanks to all who were able to make it this past weekend to our Mito Tailgate Party…we thought it was a great success.  Four families were able to meet, share stories and insights, and mingle together for a fun time.  We discussed adding a fundraiser component the next time we meet.  We will keep you all informed.  We know that there were many families who wanted to attend this time but were not able.  We hope to get together again next spring.

We were able to interview the families in attendance.  I will be working this week (probably near the end of the week) on putting together a “commercial” for mitochondrial disease to upload to YouTube and share with everyone.  Please….If any of you can send some pics of your children with mito (about 4-5), I can add some of those to the video as well.

Don’t forget that this is Mitochondrial Disease Awareness Week….try to educate as many people as you can.  The more people know, the more they want to help…direct them to UMDF.org for more info and to make donations in your child’s honor.

The Rioux family is working to get Jack Black’s PSA on the air at one of the local TV stations….please let us know how that turns out.

Thanks!

Mandy Poche

Mito Indoor Tailgate Party Reminder

We look forward to our gathering this weekend to get to know each other a little better.  Just a reminder- we will be meeting in the Breakfast room of the Holiday Inn Express in Port Allen (2860 North Westport Drive; Port Allen, LA 70767; (225) 343-9967).  The saltwater indoor pool will also be available, so bring your swimsuits! J 

Here’s what’s on the menu for our tailgate party:

Hamburgers- The Poche Family

Baked beans- The Bacot Family

Chips and dip- The Wilson Family

Dessert- The Rioux Family

Dessert and paper goods- The Gaupp Family

We have a few “maybes” for the event…we hope that everyone is in good health and will be able to join us.  Let’s plan to serve about 20 people.

  I will be bringing some pitchers of lemonade and iced tea.  If you would like something to drink other than these, feel free to bring your own.

MITO Camp 2010 Info

I recieved this email about a Mito Camp for Adults and kids with mito....if you are interested, email me and I'll send you the full application.

Dear Potential Camper,


Our Inaugural MITO CAMP 2010 (The first one in the world) is scheduled for Friday, October 29th through

Sunday, October 31st and will be held at Camp For All in Burton, Texas. (www.campforall.org)

We have included application forms which we need you to complete in order to reserve a place for you

at camp this year. Please complete the enclosed applications and return as soon as possible to reserve

your spaces. Your promptness will help ensure your participation and also help us plan a successful

weekend. Notification of acceptance will arrive once ALL forms are received and reviewed, via e‐mail.

Please make sure that your contact phone number is accurate in the event we need additional

information.

This MITO CAMP 2010 is for Adults and Children with Mitochondrial Disease. If you’re an Adult with

MITO‐This camp is for you and your Caretakers. If you are a Child‐This camp is for you and your

Family/Caretakers over the age of 5. (Regardless if they have Mito, this Disease affects the entire Family)

There is no Fee to Attend MITO Camp.

If you know of another Mito Patient who qualifies for Mito Camp please let us know so that we may

forward an application to them. We are so excited to have you join us at Camp this year! Please email us

with any questions.

MITO CAMP CO‐DIRECTORS:

Melody Braun‐Wilds

Braunml@aol.com

Kimmie Bayliss

Kimmie.bayliss@gmail.com

RETURN FORMS PROMPTLY TO:

MITO CAMP 2010

2522 Kingston Street

Houston, Texas 77019

Mito Awareness Presentation- Southeastern LA Univ

A young adult with mitochondrial disease in our area, Andrew Gaupp, will be presenting at the Open Forum at the Union on Thursday of Mito Awareness Week during the lunch times. 11am-12:45. He and his family are setting up a table in the breezeway and giving out info during that time as well. They are also attempting to contact the nursing department to place info in their lounges. He has the Kappa Alpha fraternity adopting mito as their philanthropy this year. They worked the phones yesterday for MDA telethon at 2-4pm as part of "Andrew's family" and mentioned Mitochondrial Disease when they were interviewed.

Awesome job, Andrew!

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.