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: www.PeopleAgainstLeighs.org - 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
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 director@PeopleAgainstLeighs.org. 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.