2014 Mito Awareness Rally

June 23, 2022 01:28:35
2014 Mito Awareness Rally
MitoAction Expert Series
2014 Mito Awareness Rally

Jun 23 2022 | 01:28:35

/

Show Notes

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

Facebook page for Cream Mito


Cooper's Race: A MitoAction Energy Walk & 5K Race in Kingsport, TN


Mito Mad Hatter 5K

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!

Other Episodes

Episode

May 19, 2022 01:23:57
Episode Cover

EPI-743 Leighs Syndrome Trial Update

An update from Edison Pharma on the Development of EPI-743 clinical trial for children with Leigh Syndrome. Topics for this call include: Status on...

Listen

Episode

March 12, 2025 01:32:19
Episode Cover

Extensive DNA Sequencing in Cyclic Vomiting and Chronic Fatigue: Implication for Genetic Testing and Personalized Treatment Options

In May 2023, Dr. Boles and his research group published a scientific paper on the results of 50 people that had either whole exome...

Listen

Episode 0

March 13, 2021 01:07:04
Episode Cover

Mitochondrial Defects May Lead to Autism - Dr. Douglas Wallace - 3/5/21

Join MitoAction and Dr. Douglas Wallace, the Director of The Center for Mitochondrial and Epigenomic Medicine at Children’s Hospital of Philadelphia (CHOP) for our...

Listen