Thursday, May 2, 2013

People Against Leigh's Syndrome

I am really excited to write this post today. A group of our friends came together to form a non-profit called People Against Leigh's Syndrome or PALS in an effort to further push research efforts for effective treatments and hopefully a cure for Leigh's Syndrome.

When they first asked us if we would be on board, I was overwhelmed with emotion - happiness, joy, humbled, nervous, but mostly just thankful. Thankful that we have people in our lives that care so much about our little guy to give their hearts, money and time to help him. I don't think I have ever experienced anything quite like it.

After a few months of really hard work, we have officially formed the entity, People Against Leigh's Syndrome, are putting together a fundraising event and worked through all the other details that come with starting a non-profit.

Debuting the logo, designed by the masterful Jimmy Egeland. Thank you Jimmy!

Debuting the website: - a huge thank you to Andy Dyer!

And most of all, a Gigantic Thank you to the following people who have made this happen:

Bridgette & Keith Bilski
Joelle & Mitch Derrick
Lauren & Andre Granello
Peyton Jones
Bridget & Andre Kostelnik
Sandra & Walker Molinare
Tahra & Craig Peterson
Emily & Mike Sperandio
Janae & Ken Tsai

And a special thanks to some other Leigh's families who have agreed to help kickoff this organization and share their story too.
Elizabeth & Ryan Baker
Sandra Birkaline & Shawn Huddleston
Laura and Paul Vanchiere

If you want to get involved, volunteer, donate or learn more please send an email to We can always use help to secure auction items, inkind contributions such as food, giveaways or simply your time to help stuff envelopes for example.

I can't tell you how much this means to us. This journey, this hellish, unbelievable, tcrazy journey, keeps me on my toes and humbles me to the ground in ways I never thought possible.

Thank you from the bottom of our hearts to the founding members of PALS - they are our friends and our heros.


  1. This is Amazing! I wish PALS all of the success in the world. A cure and better treatment for Leigh's will mean wonderdful things for some very special people. I have been blessed to meet most of the founding members of PALS and have to say that they are really wonderful people who are fighting for a cure! Thanks for all you do to make so many chilrens lives better!

  2. This is awesome I hope we can find a cure soon for my daughter and all the others like her. Too many innocent kids are losing their lives to this horrible disease.

  3. Laurie & Kayla - thanks for the well wishes and great response. This disease must be conquered for all in the mito community. Lori

  4. This is awesome and incredible news! I celebrate with you and applaud you for your dedication to not just your own special boy, but other children as well.

  5. yeah! Between PALS and the new Mito clinic I feel so hopefull that a cure really can be found... and fast!! Like you said from the beginning, the more people that know about this horrible disease, the better chance of finding treatments and a CURE!!

  6. My son has Leigh's too. Just turned a year old and needing to bounce around some ideas. Too desperate to keep my contact info hidden now. If anything, just getting a support group going would be nice.