Grand Rounds

If anyone can help with this....please let us know....

UMDF would like to schedule  grand rounds in a hospital in the Baton Rouge and/or New Orleans Area.  We have a sponsor that will cover the travel expense for an expert in mitochondrial disease to present grand rounds.   In addition to grand rounds we usually schedule a meeting for patients and families as well.   Unfortunately we have not yet been able to locate a hospital interested in having them speak.  The speaker is usually Dr. Bruce Cohen, but at times we have used other experts as well.

Sometimes it helps to have a local contact that will help support the program and connect us with the right contact at the hospital.  This can be a physician or other healthcare professional in your area that would help “open the door.”  Once we “get our foot in the door”  Janet in our office will follow up with them for all the arrangements.

Do you know of anyone that may be able to help?  Please let me know if you need additional information.

Yours toward a cure,

Melinda O'Toole
Membership  Services
The United Mitochondrial Disease Foundation

8085 Saltsburg Rd. Suite 201

Pittsburgh, PA  15239
Toll Free;1-888-317-UMDF
FAX: 412-793-6477

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!