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
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 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.
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!
ReplyDeleteThis 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.
ReplyDeleteLaurie & Kayla - thanks for the well wishes and great response. This disease must be conquered for all in the mito community. Lori
ReplyDeleteThis 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.
ReplyDeleteyeah! 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!!
ReplyDeleteMy son has Leigh's too. Just turned a year old and needing to bounce around some ideas.
ReplyDeleterowburyr@gmail.com. Too desperate to keep my contact info hidden now. If anything, just getting a support group going would be nice.