Champions

This is my “ALS: A Love Story.” It’s about my family, my Galentines.

I was diagnosed with ALS in April of 2017.  My wife and I will have been married 14 years this coming May.

When your last name is GALENTINE – “Just like Valentine but with a G”- Valentine’s Day becomes Galentine’s Day. It’s the one day of the year that most people pronounce my last name right!

I have been a songwriter in Nashville for nearly 25 years. I go by “Bryan Wayne” in the music world. It is only fitting that I met the love of my life because of a song I wrote.

I had written a song with my bud Big Kenny (Big & Rich) and neither one of us had anything major happening in our careers yet so we were both short on $$$.  A friend suggested we record with a guy who had a little home studio in his townhouse.  It just so happened that his platonic roommate was my future wife.

And even crazier, the very first day I met her she was home from work sick! So one of my best days was literally a day when she was at her worst.

The song was called “Fly” and it’s all about chasing dreams, appreciating every moment, living life to the fullest, etc. Thankfully it wasn’t a song about pickup trucks, drinking, and partying in a field. We ended up giving out CDs of the song as a gift on our wedding day.  And I have recorded new version of the song for an upcoming record I’m working on, where I’m putting MY vocals on songs I’ve written over the years, in the event that ALS unfortunately takes away my ability to speak, and sing.

I am coming up on one year since my diagnosis. And I won’t lie, it’s terrifying.  I know the road ahead is not going to be easy. Barring a cure, I know the odds are not in my favor that I will live to see my sons graduate high school, let alone college.

But ALS has taught me to try my best, to not take a single second for granted. Some days it’s easier said than done, but I’m trying.

And it’s taught me to better appreciate my wife, my sons, my family, my friends, and life in general. I wish I had gotten that wake-up call some other way, but if it took getting ALS to wake me up, so be it.

I have decided instead of being angry and bitter about my diagnosis, I am going to take this opportunity to remind my friends and family how fleeting life is, and how important it is to appreciate every second.

This is my “ALS: A Love Story.” It’s about my husband, Matt Bellina.

I first me Matt in August of 2002 when we were both Virginia Tech. Matt thought I was a “drunk college girl” (I was not) and gave me dead flowers out of a dumpster. I couldn’t remember his name I was so flustered by this cute boy that I referred to him as “the hot one” for a week until we met up again.

Funny to think that’s how we started. Now, we have been in each other’s lives for over 15 years. Matt was officially diagnosed with ALS in April of 2014, so our family is coming up on four years of living with the disease.

Our life with ALS is made a little bit easier because of Matt’s inability to accept his diagnosis as a roadblock. He is very much in this fight, and mostly for others dealing with terminal illnesses, ALS and otherwise. Of course, his humor shines through most, lifting us all up when things don’t go according to plan in our day-to-day life. With ALS, that can happen quite a bit.

Before our diagnosis – Matt surprised me one night by having a friend drive him from campus to my townhouse. He crept under my window and started playing his harmonica until I came outside. And now, after our diagnosis – I have so many moments I cherish with Matt. Like when I come downstairs from putting Pax, our youngest son, to bed and see him cuddled up with our older boys, JP and Kip, reading a bedtime book, or discussing the day, or talking about God. It’s those times where Matt is just being a good dad to our boys, that really get me.

Matt is my heart. I do most everything in my life with his voice in the back of my head. If it’s something I know he wouldn’t be proud of, I know it’s not a good idea. I appreciate his understanding. I am not the easiest person to live with, but he sticks with me. He puts up with my moods and frustrations and still loves me, through it all.

On our first Valentine’s Day together, we promised not to get each other anything. I stayed true to that pact, and got him nothing. He made me a handmade card (I still have it), a giant balloon stuffed with fun things, and other trinkets. I looked like a chump. Let’s just say he’s the romantic in the family!

When it comes to ALS, everything in life becomes weird. Things you never thought you would do, are now every day occurrences. You have to laugh. and love. You have to love and grow together through it all, or you are going to fall apart. And for us, to live with this disease, that falling apart simply wasn’t an option.

Here at Augie’s Quest, we’re gearing up for a heart-filled month – with many of our ALS champions offering up a little of their love for the cause.

We’ve themed February, “ALS: A Love Story.” Starting today, we’ll feature one “ALS: A Love Story” story across Augie’s Quest’s website, social media and email list – culminating with a new twist on Augie and Lynne’s story on Augie’s 60^th birthday, February 15.

We’re focused on sharing our many ALS stories of love – moments of hope, support and comfort via friendships, marriages, family, caregivers, kids, grandkids, and of course, pets. We know these love stories are out there, despite this horrible disease – and felt it the perfect time of year to share that love with our entire community. And in doing so, together, we can help raise a little awareness and interest in this other side of ALS, one that we don’t often hear as much about.

Be sure to follow along on our social channels, share the stories with your personal networks, and get to know some awesome love stories from Boomer, Caitlin, Evan, Catherine, Bryan, Stacie and more.

And, we know many of you likely have your very own personal stories and experiences with love despite ALS, or in some cases because of ALS. Please join in and share yours, too!

So, will you join us in celebrating love this month?

Xoxo,

Augie & Lynne

Check out Augie and Lynne Nieto on a recent segment of CBS’s “The Doctors” !

“ALS isn’t an incurable disease; it is an underfunded one. This is a message you’ve heard Lynne and I share countless times, and one that drives our passion and tireless work for this cause.

Yet, never has it been more pressing, as we now have a promising drug on the near horizon that could slow the progression of the disease. The only thing standing in our way — the urgent funds needed to drive this, and other potential treatments and cures, across the finish line and into the marketplace to benefit so many people living with ALS today.

If you’ve ever wondered what our daily quest to #EndALS looks like, whether in the ALS Therapy Development Institute lab or behind the scenes of our innovative approach to ALS, we captured that story of our progress in a brief, easy-to-digest (and dare I say, “hip & fun”) explainer video.

Check it out!

We asked Natalie Morales, of NBC/Access Hollywood and our 2017 Champion for ALS Award Winner to lend her signature voice to the piece and Natalie graciously agreed, delivering a passionate and informed message about our cause. You’ll quickly see how we put every donation to work and why every gift is so important to our life-changing research.

Please share this video on your social channels and let your family, friends and colleagues know what is possible when you give to Augie’s Quest to Cure ALS.”

-Augie Nieto

Fundraising Efforts Drive Critical ALS Research for Augie’s Quest Rock ‘n’ Roll Marathon Series Events in Brooklyn, Philadelphia, Denver and Las Vegas

Orange County, November 14, 2017 – Augie’s Quest to Cure ALS today celebrates the achievements of 303 runners, the many champions living with ALS, a team of researchers, 560-plus fundraisers and key health and fitness clubs – its Team Quest4ALS. Over 13 months, the group successfully participated in several Rock ‘n’ Roll Marathon Series events, helping to drive awareness, advance funding for critical research, and race to find an ultimate cure for ALS.

Team Quest4ALS has raised $1,030,869 to defeat the disease through Rock ‘n’ Roll Marathon Series events in Brooklyn, Philadelphia, Denver and Las Vegas. Amyotrophic lateral sclerosis, or ALS, is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement and is often referred to as Lou Gehrig’s disease. ALS isn’t an incurable disease, it is only underfunded. Every dollar raised from the runners supports innovative research toward effective treatments and cures through Augie’s Quest and the ALS Therapy Development Institute (ALS TDI). Team Quest4ALS local results include:

• Brooklyn Rock ‘n’ Roll Half Marathon with 152 runners raising $417,386
• Philadelphia Rock ‘n’ Roll Half Marathon ,10k and 5k with 72 runners raising $352,000
• Denver Rock ‘n’ Roll Half Marathon with 31 runners raising $91,000
• And just this weekend for the Las Vegas Rock ‘n’ Roll Half & 10k with 52 runners raising $179,000

The next Team Quest4ALS race is the New Orleans Rock ‘n’ Roll Half Marathon on March 3-4, 2018. Check out www.teamquest4als.org to register and join the race to find a cure.

“Several of our health and fitness clubs proudly joined Team Quest4ALS, and we continue to add more to our Endurance Program, including Greenwood Athletic & Tennis Club, ClubSport, Vida Fitness, Las Vegas Athletic Club, River Valley Club as well as well as our longtime supporters, The Atlantic Club and Newtown Athletic Club,” says Kevin McHugh, who ran in all four Team Quest4ALS events, and is COO, The Atlantic Club.

The driving force behind the success of Team Quest4ALS are the many runners and champions living with ALS – from Philadelphia’s Matt Bellina, a 32-year-old husband, father to three boys and Navy veteran diagnosed with ALS in his late 20’s who lead a running team including his wife Caitlin and kicked off the ½ Marathon at the starting line; or researchers Fernando Viero, M.D., and Alex Calo, who fundraise and run with Team Quest4ALS while making strides every day in the lab at the ALS Therapy Development Institute in Cambridge, MA; to Claire Craven, who went far out of her comfort zone to train, walk and complete all four of the 1/2 marathon races to honor her husband, Eric, who is a board member at ALS TDI and lives with ALS.

“Although, we have now completed our initial four races and raised over $1,000,000, it is time to review our success and see how we can involve even more of our Clubs and members in Team Quest4ALS in 2018,” adds McHugh. “We are committed to generating the funds necessary to bring AT-1501, and other promising treatments, to the market for those in need. In racing and raising money, most importantly, we are providing HOPE for those with ALS!”