We had a wonderful Awareness Rally on Friday, Sept. 5, featuring people who are doing amazing things to raise awareness about mitochondrial disease.
Each speaker brought great ideas to the table and truly demonstrated the diverse ways we can raise awareness in our communities. We want you to get excited and inspired about raising awareness.
Below, you will find some helpful links and ideas from our speakers. Let’s take action to improve the lives of patients and families with mitochondrial disease!
Kristi Wees’ blog, Baby Food Steps (and her Mito Minutes)
Kristi’s California Pizza Kitchen fundraiser Sept. 15-18 in Pittsburgh
Request a CPK fundraiser night
Christine Knox’s Mito Quilts of Hope website
Facebook page for Mito Quilts of Hope
Christine’s Story on Indiegogo campaign
Cooper’s Race: A MitoAction Energy Walk & 5K Race in Kingsport, TN
Here’s an easy way to make Mito cookies! Cut out sugar cookies using a jelly bean shaped cutter, then decorate with frosting and round sprinkles. Put some in baggies with an information card about Mito and hand them out to your school class, at work, at parties! Thanks, Nicole and Natalie Dion, for the great idea!
Cooper Open and Cooper Open Scholarship in Greenland, NH
Kelley and Alyssa Curley, along with the rest of their family, make and sell these rainbow loom bracelets for Team Lissy Loo for the MtioAction Energy Walk & 5K. So far they’ve sold over 700 and made $700 for Team Lissy Loo! For more on Team Lissy Loo, click here.
Jeantine Lunshof was recently diagnosed with Mito and takes every opportunity to educate her Harverd colleagues. Her team for the MitoAction Energy Walk & 5K is Running Genes.
Ethan Allen, captain of Mito Warrior’s Platoon, has been collecting bottles and cans for his MitoAction Energy Walk & 5K team. He also holds information booths, has been in the media, and recently participated in the Fonda Fair Convoy for a Cause. For more on his story, click here.
Tell your story to legislators; fight to pass bills; be vocal!
Mito Support of New England meeting feature Rep. Paul Heroux, who is trying to pass a bill to form a Rare Disease Advisory Council in Massachusetts
House Bill 977 would mandate coverage of the Mito Cocktail for all mitochondrial disease patients in the state of Massachusetts.
Thank you for helping raise awareness!Date: 09/06/2014
Dr. Neena Nizar – Share Your #RareDiseaseTruth & Give Love A Chance