A book published by Kendall and her friends to help fund research!

  Please check it out and purchase on Amazon (Click HERE to purchase).  Proceeds will go to Kendall's Research Fund. 

Kendall's Diagnosis:

Kendall is diagnosed with Leigh Syndrome, (specifically mitochondrial DNA-associated Leigh Syndrome, m.3688G>A) which is a rare and potentially devastating mitochondrial disorder affecting 1 in about 100,000 children.  Leigh Syndrome is a progressive neurodegenerative metabolic disorder that affects the central nervous system. Affected children often experience vomiting, seizures, delayed development, muscle weakness, and problems with movement and breathing. To date, mutations in over 60 genes, both nuclear and mitochondrial DNA encoded, have been shown to cause Leigh Syndrome. Kendall has a de novo "new" mutated gene in her mitochondrial DNA (m.3688G>A) that that manifested symptoms in 2016, when she was around two and a half years old.  Prior to that time, Kendall was healthy and reaching all milestones, so it was devasting for us to see the regression and learn that this mitochondrial disease could possibly take her abilities to walk, talk, and swallow. But Kendall is a tough and determined girl who continues to motivate us in our race towards a cure.   

Current Treatment 
   

     

Kendall takes a cocktail of vitamins and medicines each day, and has regular sessions with physical therapists, occupational therapists, and speech therapists. She walks with assistance and although she has balance issues and her gait is not perfect, she maintains her independence to move around. She has leg braces called AFO’s to help her walk correctly. She has lost function in gross and fine motor skills, and has developed some speech difficulties. However, we are learning to be thankful for each day that we get to spend with her and realize how important it is to make the most of every minute.

RESEARCH WE FUNDED

Family Finds Unique Way to Treat Rare Disease (Blog) | Eureka blog (criver.com)

In 2020, we funded a drug repurposing study to see how the m.3688G>A genetic mutation responded when tested against 7,000 small molecules.  Costs were $150,000. 
Result: a drug called Vorinostat, which we are further studying. 
To learn more, please CLICK HERE. 

Next Steps

1. Mitochondrial Augmentation Therapy (MAT) by using Kendall's stem cells or in lieu of her mom's healthy stems, we hope to be able to replenish the cells in Kendall's body with healthy mitochondria.
2. Gene Editing
3. Shifting Heteroplasmy Levels
4. Mitochondrial targeted precision

You can make a difference!

You can make a tax-deductible donation.

Our fund through the UMDF is a 501(c)(3) non-profit and 95% of the funds raised through this page will go towards research to help Kendall and others battling Leigh Syndrome.  To give online, you can click the Donate Button or you can send a check to the Kendall Conner Research Fund, c/o UMDF, 8085 Saltsburg Road, Suite 201, Pittsburgh, PA 15239

Create a birthday fundraiser for Kenall's UMDF Fund on Facebook.

Please notify us and the UMDF in advance, so we can make sure the funds are properly appropriated.

Event for a Cause

Next time you host a party, wine or beer tasting, watch party, car show or other event, please think about partnering with our non-profit to receive a little fundraising money or donations.  In our rare world, every dollar counts!

Share Kendall's Story with Others

Awareness will not only help our fundraising efforts, but more importantly, we hope that by telling Kendall's story it might get the attention of a researcher who has the capabilities to help develop a treatment or cure.

If you or someone you know has the m.3688G>A genetic mutation, please reach out to us at hope4kendall@gmail.com to discuss how we might partner on research projects.

Thank you, and we appreciate your continued support and prayers!