John Neal: “As far as I go…well…my story is a bit different than most. Mainly because I am not affected by a rare or undiagnosed disease. Not directly, anyway.

Back here in Philadelphia, we had a girl named Hannah. She passed away from this complications due to Krabbe Leukodystrophy shortly after Christmas  of 2014. But before she did, with the help of her amazing parents and wonderful community (including nearly 100k Facebook followers from around the world), she was able to persuade PA lawmakers to pass “Hannah’s Law“, ensuring all newborns will be tested for Krabbe. We are only the 9th state to pass such legislation. However, the law has yet to be implemented in seven of them, including PA. In her two short years on earth, Hannah became a local hero. I grew really close with the family, and was their personal advocate. With Hannah gone, I have become an advocate for the disease and many families battling it. I promised her that I would do everything in my power to see that this disease stops taking the lives of these babies, and stops ruining families. I promised her that I would watch after her mom, dad, and big sisters. And so for the past (almost) two years, that’s what I have been doing…

So technically, I am not an “organization” as much as I am an advocate, individual, and father of two, fighting a battle alongside many families world wide. The battle is to get medical professionals to recognize that testing is beneficial, and that the current treatments available are viable. But they go hand-in-hand. These kids can’t get treatment if they are not tested at birth. And, of course, to raise awareness and support medical professionals and researchers as they try to find a way to regrow myelin.

What do I do? Well, I have a Team Krabbe Strong Facebook page that I use as my platform to do a lot of the aforementioned things. I have about 8,000 followers and I am friends with about 60 families world wide, offering them any kind of support/help I can. Sometimes, it just a listening ear, sometimes it is helping them organize an event, sometimes it is arranging media coverage to help them get their story and this disease out there, other times it is helping them raise funds… But most times it is creating experiences to help them escape the diagnosis, if only for a moment, and let them live life as they dreamed it would be with their child. To help them create memories, and to make them smile.

This is how I ended up meeting you! I had reached out to the Milwaukee Bucks about a family in Milwaukee, whose son suffers from Krabbe Leukodystrophy. Doctors say he has about 6 months left. And because these kids are given a lifespan that doesn’t exceed their second birthday, Make-a-Wish is not an option. So I have taken the initiative to help create these experiences. With MJ, I reached out to the Bucks. I am so grateful they have decided to work with me. To date, I have helped grant 20 separate experiences involving the NFL, MLB, MLS and now the NBA (Diamondbacks, Phillies, Flyers, Stars, Red, Padres, Chargers, Rangers, Brewers, Twins, Cubs, and a few more). My last experience gained national attention (ESPN, People Mag, and much more) and went viral on social media. See Below:

				Clemson holds pep rally at home of terminally ill baby Addison Bolt couldn’t go to a Clemson game as she fights Krabbe disease, so the school decided to bring a pep rally to Addison and her family.
				View on espn.go.com	Preview by Yahoo

I am a Restaurant GM/Chef and work long hours! My wife is a Special Education Teacher. We have a three year old daughter and a 7-month old son. So needless to say, we lead a hectic life. But when I tuck them in to bed, I work late into the evening to keep my promise to Hannah.

Gina, I hope this gives you a good idea of who I am and what I do. I hope to turn this into a non-profit organization and do a lot more in the future–once life settles down. I wish I could do it as my career. I love these kids and their families, and my passion…well, I haven’t been this passionate about much in 30+ years of life. If I can be of any assistance to you in the future, please don’t hesitate to ask! Right now, I focus all of my efforts on families affected by krabbe…but who knows what the future holds.

Best,

John